Friday Feature: April Love’s Path to Hope, Diagnosis & Empowerment

In honor of Autism Awareness Month and Adult Autism Awareness Day on April 18, we wanted to highlight the powerful and deeply personal story of April Love—a woman navigating life with both autism and myasthenia gravis (MG). Diagnosed with autism later in life and MG after a long and painful search for answers, April shares her journey with striking honesty and resilience. Her story sheds light on what it means to be misdiagnosed, misunderstood, and ultimately empowered to advocate for her health and identity. April’s voice is a vital reminder of how meaningful awareness, compassionate care, and community support can be—especially for adults with autism and those living with complex, overlapping conditions.

Understanding Your Journey

Can you share a little about your journey with both MG and autism? Which diagnosis came first?

I was diagnosed with autism in my 30’s. I am from the “lost” generation. When I was a child, autism was still under childhood schizophrenia, and so many of us were not diagnosed. I am originally from rural Indiana, and even if I had been diagnosed as a child, there really weren’t any treatment options available. I didn’t talk much as a child, and I didn’t interact like other children. Even at a very young age, I knew I was different. Eventually, I saw myself as a freak. Even though I was academically advanced and had gone to college, I just wasn’t able to use the knowledge. There was a disconnect between what I could learn to pass a test and what I could apply in the real world. Graduating from college with Highest Distinction Honors felt worthless when I couldn’t utilize what I had learned, and so I became a bit of a hermit, feeling like an utter failure.

April Love

In addition to autism, I also dealt with PTSD and chronic depression from multiple traumas in my life from childhood abuse and kidnapping/rape at the age of 19, and it was a very experienced psychologist who realized that even though I had PTSD and depression, there was something organic in nature involved as well. She sent me for testing, and I was diagnosed with high functioning autism. This diagnosis was an absolute relief to me because I was no longer a freak, my brain was just wired differently. Armed with this knowledge I was able to find ways to live more productively.

After approximately ten to fifteen years, I was living at my highest functioning level ever in San Antonio, Texas. I was working full time and had an active (for me) social life. I had also picked up tools along the way to help me manage my health, household, and social functions. With my kids all grown up and these tools, I was able to live the kind of life that I wanted, and I had high hopes for the future.

Then myasthenia gravis hit. There were some little red flags a few years before, but nothing that would make anyone think MG. I had some vertigo and balance issues. I had some strange larynx issues, which remained a mystery, but none of these were anything all that concerning.

Until I got sick with a bug eight years ago. It was a nasty little bug that was going around. I went to the doctor, and he treated me with antibiotic and steroid shots and prescribed a Z-pack, saying I’d feel better the next day. Unfortunately, I never felt better. I got sicker and just remained sick even after the bug went away.

I spent the next year going back and forth to my primary care doctor and other doctors. I started completely losing my voice and was so weak. I was short of breath. Eventually I went to the ER and was treated for asthma, but relief was short-lived. I saw a pulmonologist who said it wasn’t my lungs and thought it was upper airway, but I was still short of breath, so I went back to the ER. After examining my larynx and not being able to find anything wrong, they said it was anxiety and sent me out the door.

From there, I saw an ENT, Dr. Ian Alexander, who saved my life. He didn’t look at me and just see an autistic, trauma survivor who was having anxiety issues. He saw me as a real person with real breathing issues. He listened to how my voice issues would come and go with the change in temperatures. He paid attention to my whole body, not just my ear, nose, and throat. He saw me coming in with a walker and the intense weakness. And somehow, he figured out that I might have myasthenia gravis, which sent me to a neurologist nearly a year after the initial bug and my taking a Z-pack, which I believe led to the MG rearing its ugly head.

Still, the initial neurologist was not convinced because my bloodwork was all negative. He was leaning more towards MS. My ENT was still watching me, and as spring brought higher temperatures in San Antonio and my symptoms increased, including a droopy eye that landed me in the ER yet again, my ENT was even more certain I had MG, and so he asked me if I wanted to try a medicine, Mestinon. He told me to stay safe, but he wanted me to test it and see if it helped. So, I took my first teaspoon of Mestinon, then walked outside, called my daughter, and walked while talking on the phone, a feat that I normally could not do and would result in me losing my voice, but that day, I could do it!

And so, my journey with MG officially began. It would take a couple of more years before I would be officially diagnosed with seronegative myasthenia gravis, but the ENT’s willingness to treat me opened the door. The journey would be long and hard. My first ICU visit, they added Cellcept. My second ICU visit, I got my first round of IVIG. Since then, I’ve had two other hospitalizations, one with the common cold and the other with COVID, but I’m somewhat stable on Mestinon, Cellcept, and monthly IVIG.

Unfortunately, stability has come at a price. I am now on disability and am homebound, but I am alive, and I have learned to live my life with MG to the best of my ability.

How did you feel when you were diagnosed with MG? Did having autism shape how you processed the diagnosis?

Much like when I received my autism diagnosis, my initial response was relief. After being dismissed in the ER, saying my symptoms were anxiety when I knew that something was physically wrong with me, I now had a diagnosis, a real and very physical condition that I was facing. And with that real diagnosis came real treatment. And real treatment meant hope.

Being autistic did help me to process everything. I am a very logical creature and have been able to effectively separate my emotions from situations, including very traumatic ones. Yes, I had to grieve following my diagnosis of MG, but I was able to look at the situation logically and see what I needed to do to treat this disease and learn to live a fuller life having this disease. I was able to box the emotions up and put them aside for a bit and objectively look at the situation, including the fact that I needed to keep my stress level under control since stress makes the MG worse. I realized that I needed to get back into therapy so I could keep my emotions in check, grieve in a safe manner, and identify PTSD triggers that having this disease was bringing to the surface. It wasn’t easy, but I think my very logical brain due to being autistic actually helped me in this situation.

What was the biggest challenge you faced when navigating both conditions?

One of the biggest challenges was simply being taken seriously. It was just too easy for doctors to dismiss me because I was autistic and had PTSD. They couldn’t find any easy solutions, so obviously (to them) it had to be anxiety.

Beyond that, there was the communication issue. I am very articulate, but I can easily go low verbal in a stressful situation. On top of that, I was literally losing my voice, so any words I could speak had no voice to them. It can be hard to adequately communicate when you have no voice and you’re struggling with putting words together.

Another issue is the variable nature of the disease. One of the things with autism that I desperately need is routine and structure, but when you never know day by day and moment by moment how you are going to feel, it makes it very hard to stay in a daily routine, especially when your medical needs are far greater than they had ever been before.

Daily Life and Management

How do MG and autism interact in your daily life? Do they ever overlap in ways that make certain situations more challenging or easier?

Thankfully, I am no longer dismissed by the medical community, but communication is still difficult. I do better with written communication, and so I always try to make sure I get everything in writing when it comes to medical issues, but that doesn’t always happen. It can also be difficult to be heard because I lose my voice frequently. Many times, when I am in public, people assume I am deaf because I have to have things repeated because I process language a bit slower and because when I respond I many times have no voice or just a squeak for a voice.

The other major challenge is my need for routine and structure when I have a disease that varies so widely throughout the day, day by day, and where I am during the IVIG process. Finding a routine that I can work with that allows me to be flexible is challenging when the autism screams of its need for structure. This is an area I’m continuing to have to work on so that I can function better.

The increased medical care is also quite challenging. Just managing my diabetes was difficult, and I needed the help of an occupational therapist to find solutions so that I could take my medications appropriately and consistently, and now I have a far more complicated medical regime I need to implement. I’ve had to find more solutions, which has consisted of some trial and error to find what works best for me.

A less serious concern to me is that I already tend to have a flat affect, which is common with autism, but MG has actually made that worse because my weakened facial muscles make my expressions even more flat. My response to that is, “Oh well.” I’m used to having a flat affect, so I don’t really care.

The biggest strength that comes from autism is again how logical I am. That logic allows me to look at a situation while putting the emotions aside until a later time. This allows me to look for solutions instead of getting bogged down in emotions. I may be overwhelmed at first, but eventually I will break things down into smaller steps that I can manage and then start taking one small step at a time to reach my goal.

Sensory sensitivities are common in autism—do MG symptoms or treatments ever impact your sensory experience?

I have constant sensations in my feet and legs. They don’t normally register as pain to me, but I don’t tend to feel pain until it becomes extreme, so maybe I’m lucky in that aspect. When the sensations reach a level of annoyance or pain, it can be difficult to deal with, and I think my stimming increases during those times in order to cope with it.

I have also always had trouble recognizing when I am sick. Many times, prior to MG, I would run a fever and not know it. Now that I’m on Cellcept, that is worse because I don’t tend to run fevers, and so I’m less likely to recognize when I’m sick.

The sensory issues are even more noticeable during IVIG. The Benadryl tends to make me have restless leg syndrome, so the only way I can manage is just to constantly move my legs. My skin gets very irritated with the Tegaderm, tape, and Coban, and once I start itching, my itch response is heightened. So my nurse tries to find products that are less irritating.

Of course, hospitalizations are horrible when it comes to the sensory issues. ICU is a constant source of sensory overload, but at least I’m in a private room. The hospitals try to get me a private room when I step down, but that’s not always available, so when I have to share a room, it’s very difficult for me. I need to have the TV off and the curtains closed so I don’t see activity going on in the hallway, but when you share a room, my roommates tend to have the TV on and have visitors. I can’t fault them for that, but it sends me into sensory overload.

Are there any accommodations or strategies that help you manage both conditions effectively?

I’m always looking for ways to improve my functioning level. Before MG hit, I was at my highest functioning level ever, but the strategies I had in place weren’t adequate when it came to MG. I had learned to put my medication strip in a spot where I would see it every morning, but now I needed to take medications multiple times throughout the day, so I had to figure out how to manage that. The use of a white board and planner with my diabetes and overall functioning were still helping, but not enough. So, it has been an evolution to find what works, and I’m always open to new strategies that will help.

For the medical side of things, I’ve had to use pill strips that have four slots a day, which I keep in an area that is visible to me. If I can’t see it, I will forget! My morning medical routine has expanded tremendously, and I keep all of that in easy access. I no longer use the white boards, but I still use a planner, which I record my medical stats like blood sugar, blood pressure, oxygen, and NIF along with unusual symptoms and just my normal functioning needs like cleaning.

The difficult part of all of that was I could no longer have the rigid structure I needed for the autism because MG fluctuates all the time. This was a difficult transition for me. I need structure, but MG won’t let me have that structure, so my therapist gave me the idea to have more than one routine. I could have a routine for good days, and I could have a different routine for bad days. That has since morphed even further when I started using the Finch App. I knew I couldn’t have set in stone goals on the app because when I couldn’t check them off due to MG weakness, I would beat myself up for that. So instead, my goals are questions such as “Can I shower today?” or “Can I take the trash out today?” By phrasing them into a question instead of a statement, I was still making my goal, whether I could physically do it or not. If it’s a weak day and I don’t have the energy to take a shower, I still get credit for the goal because I took the time to ask myself that question and then answer it based off of my MG level. This also keeps me in my routine whether I could do a specific task or not.

I also have to have a completely different set of expectations depending on IVIG. A therapist who understood how visual I am helped me to see it like the tides. I have IVIG and the tides are in with a beautiful woman who has given me strength. Then as time progresses, the tides along with my energy getting lower and lower by the mean, ugly monster sucking my strength away. Then I get IVIG, and the cycle starts all over again. This visual association helped me to see my pattern more clearly and then gage my expectations accordingly: IVIG week is for rest, the next week I feel good, the next week I feel okay, and the last week I feel crappy. And then it all starts again.

It's still a struggle, but I am open to new solutions to help me function better on all levels, whether it’s medical, cleaning, cooking (or how to make cooking as microwave friendly and as easy as possible), or socializing and having fun. Some days are better than others, but I try to focus on finding solutions.

What helps you when communicating with healthcare providers? Have you faced any difficulties advocating for yourself in medical settings?

Communicating with healthcare providers has not been easy. When I was dismissed by the ER doctors during my second visit, it made me afraid to even go back to the ER. I should’ve gone more than I did, but I did not want a repeat of what had happened, so I suffered far longer than I should have. It also didn’t help that I didn’t have adequate language to describe what was going on. I was short of breath and didn’t feel good. I knew I was sick, which meant I was really sick because normally I wouldn’t be able to tell that I was sick, but I struggled with explaining this and other things to the medical community. Plus, I didn’t understand how things were connected. Yes, I had balance issues and felt weak, but how was that connected to my shortness of breath or how easily I got choked when I would swallow or my voice issues? You don’t know to tell a doctor about all of these different things because the primary issue was, I couldn’t breathe!

I didn’t know what medical gaslighting was, nor had I ever really felt the bias that can exist between the medical community and women, those with mental health issues, and autism. But I became very aware of it after that encounter. I think the anger that I felt after that situation prompted me to keep fighting, and I’m so grateful I did!

One of the things that really helps me is to have everything written out. Autism is a language processing disorder, and for me, I am very visual. If I can’t see something, I have no concept of what it is. So, when strange words are uttered that I’ve never heard before, like myasthenia gravis, all I hear is a jumbled mess. In fact, the first time my ENT mentioned myasthenia gravis, all I could make out was the “m.” Therefore, it’s imperative that words are written down. Now that I understand the lingo, I can manage better, but anything new thrown my way can leave me scratching my head.

Likewise, I also needed to write things out when I went to the doctor. I can express myself so much better in writing than verbal communication.

Still, this sometimes was not enough, so for a while different friends would come with me to appointments, especially to the ER, testing, or my neurologist. Now that I’m well established with my neurologist, I no longer feel that is necessary.

I am also blessed with a couple of close friends who were in the medical community. One is a retired pediatrician. He once made the comment that being a pediatrician was akin to being a veterinarian because many of the children were non-verbal and unable to tell you want was wrong. I think his skills as a pediatrician helped him to understand me as an autistic adult. Many times, I would call him and tell him what was said or tell him things that were happening, and then he would tell me what words to use when talking to my doctors. He was a huge help in my journey to get a diagnosis and in getting my needs met.

Another close friend is a retired nurse practioner. During my first ICU visit, she came every day and helped me to navigate all the medical terminology and communicate with my medical team when I had strange symptoms crop up. She helped me tremendously in finding solutions and advocating for myself.

This was especially true when I was hospitalized with COVID last year. Even though I was at the same hospital that I normally went to, there was a different hospitalist. He didn’t seem to have a clear understanding of my MG needs because he was more focused on COVID, and I was in isolation, so no one could come and help me advocate. However, I would talk to my friend on the phone, and she would tell me who to ask for and what to do to make sure that I could get my needs met. And as fate would have it, she too was recently diagnosed with seronegative myasthenia gravis, and so we try to help each other via phone or text when we are too weak to talk.

Since being diagnosed, I have also joined a local MG support group along with various online support groups. This gives me even more feedback when I need it that I can then use whenever there is an issue in my medical care.

Community and Awareness

Do you feel there is enough awareness about how MG affects neurodivergent individuals?

Absolutely not! On the one hand, there’s not a lot of awareness about MG because it’s a rare disease which most doctors have never really seen, and most people have never heard about. On the other hand, there’s autism, which is still cloaked in myths and misconceptions and where we adults on the spectrum are struggling to be heard. I personally do not know of another autistic adult with MG. I’m sure there must be others like me, but I have not met them yet. Both MG and autism have isolated me, but thankfully the internet does open up the world so much more.

What would you like the MG and autism communities to understand about your experience?

Medical gaslighting is a real thing. Just because I am autistic and have strange symptoms that a doctor can’t find definitive answers for does not mean it’s simply my autism, anxiety, etc. For the MG community, especially those who have struggled to be diagnosed, you know how difficult the struggle is. Now add a communication disorder on top of that along with an extreme need for structure with a disease that is anything but structured and you have executive dysfunction. Then there’s the hypo- and hyper-sensitivities. MG is a harsh disease that can take a toll on any of us, but when you add autism to the mix, it just makes everything so much more complicated.

And one thing most people may not be aware of is that there are virtually no services for autistic adults. Those of us in the lost generation didn’t get services as a child either. And for some strange reason, services virtually disappear once you hit the magical age of 18, and what services may exist have years long waiting lists. Also, just like MG is a snowflake disease, autism isn’t a one size fits all. We are each different and have different areas of strengths and weaknesses.

As far as the autism community goes, I have felt totally accepted by the local San Antonio autistic adult community. When I became homebound, I lost almost all of my friends, but it was my autistic friends who kept in touch with me and came over to visit me and have movie nights with me. Many of us do have co-morbid conditions, plus they seem to understand social isolation better. Maybe I was just lucky, but they accepted me for me. Hopefully other autistic communities will do likewise.

For me, the biggest community that needs to be addressed is the non-MG and non-autistic community. I think those with MG, even if they don’t have autism, can look at their own experiences and then have empathy for someone with both MG and autism. Likewise, I feel like the autism community has a lot of empathy, contrary to what many may believe, because they know how hard life can be as is, then add a rare disease!

So, to the community in general, first I am a real person. I have real feelings. I have empathy. I have been married and have raised children and am now a grandmother. I went to college. I am real. I am autistic and proud. But I struggle, and unfortunately there is very little support out there for autistic adults. See me, hear me, believe me, and if it’s within your power, be there for me. Sometimes a simple phone call, text message, email, or a visit can literally change the world for me on bad days. And surely, I am not alone in this.

What advice would you give to someone who is navigating both MG and autism for the first time?

If you haven’t been diagnosed yet, don’t give up. If you have been diagnosed, just keep putting one step in front of the other. Don’t be afraid to ask for help, whether that be family, friends, social workers, therapists, etc. Your autism needs are important. Stress is a huge trigger for MG, so if your autism is causing you to be overwhelmed or your sensory issues are off the chart, it could cause your MG symptoms to get worse, so doing what you need to do for your autism is helping you with the MG. And remember, navigating the world of being newly diagnosed MG is tough for the neurotypical. It’s a tough disease…period. So don’t feel bad about yourself if you are struggling. Find safe people that you can talk to about the realities of what you are going through. Use your strengths to help you because that might actually be a niche strength, like my logic, that will make it easier for you than a neurotypical. You are worth it. Autism does not make you less than. You deserve the best medical care that is available, and sometimes to get that, we have to make our voices be heard, so whether it’s speech, writing, sign language, help from a friend, or any other way that you communicate, use your voice and be heard. And know you are not alone. I’m here, and there are probably others, and I hope that this will help bring us together so we can have that mutual support.

Looking Forward

How has living with both conditions shaped your perspective on life?

Before I was diagnosed as autistic, I felt like a freak and a failure. Once I was diagnosed as autistic, my perception of myself totally changed. I finally understood why I was different. I have embraced autism. If someone said they had a cure for autism, I would turn it down because to remove the autism means I would cease to be April. I acknowledge the challenges that have come with autism, but I see it more as a social disability versus a true disability. The world is made for neurotypicals, and I just don’t fit in that mold, but I’m okay with that.

As an autistic adult, I see myself as strong. I learned how to navigate in a world that doesn’t really know or accept me. I am a proud autistic. Still, I do have to live in this world, so I have discovered ways to be both. I don’t have to conform and pretend to be neurotypical, and I can be proud of my successes.

Before MG hit, I was at my highest functioning level ever and was looking forward to the future. I was working full time. I had two books published, was a professional artist albeit a starving artist, and was public speaking, sharing my story to help others.

Then MG hit. I went from being employed full time at a job that truly fit my needs to having to go back on disability. All of the social services I had worked so hard to get off of, I now held my head in shame as I was once again in the perpetual poverty cycle of needing the social service net.

MG stripped my life of so much I had worked so hard to gain. I lost almost all of my friends and most of my support system. I had to stop working. For the first few years, it was a struggle just to breathe.

But I’m a fighter. I’ve always been a fighter. I’ve endured and survived childhood abuse. I’ve endured kidnapping and rape at the age of 19. I’ve refused to let the abusers in my life silence me. I worked too hard to let MG take my life, and it was just a disease. It wasn’t a malicious person out to hurt me in unbelievable ways; it was just a stinking disease.

So, I did what I always did…I survived.

Yes, my life has changed in so many ways, but I am alive. I have learned how to live with MG. At times, it’s not the life I want, and it was definitely not the life I had planned for myself, but this is my life, and F--- MG! MG may one day take my life, but I refuse to let it take my life away from me. I still live, and I will live to the best of my ability, until the day I die. And unlike autism, if they find a cure for this disease, you better believe I will take it. I pray for a cure or remission, but until that day comes, I live. As long as there is breath, there is life, and I know what it’s like to fight for breath, so I’m not about to give up now.

What can healthcare providers, caregivers, and support groups do to better support individuals like you?

See us. Believe us. Like my pediatrician friend said about his being akin to a veterinarian, healthcare providers may need to take that extra time to really look at us and at all the things we may be unable to say like he had to do with his pediatric patients. We aren’t animals, obviously (or maybe I shouldn’t assume that everyone realizes that), but we may not be able to communicate as effectively and sometimes not at all. Don’t blame everything on autism just because you can’t figure out what is wrong. For example, one of my early red flags was choking while I was eating. My pediatrician friend noticed this happening to me and told me exactly what to say to my doctor because he was afraid, I was aspirating.

Because of his words, my doctor sent me to a different doctor who was able to document that I had laryngeal spasms. Unfortunately, that was as far as it went. That doctor didn’t understand why I was having them, and so he came to the conclusion that maybe because I’m autistic my larynx was hyper-sensitive. Could my MG have been diagnosed sooner and before I ever took that dreaded Z-pack? I don’t know, but had someone investigated a little more thoroughly instead of just blaming the autism, maybe I would’ve known about MG sooner and would’ve known that a Z-pack was off-limits.

Another suggestion is please don’t say things like you know what it’s like for us or that everyone is a little bit autistic. When people who don’t have MG talk about being tired too, I have to roll my eyes a bit because most, unless they have another disease, have no idea the kind of bone crushing fatigue that comes with MG, and so it minimizes our experience with MG. The same can be said for autism. Unless you are autistic, you really don’t know what it’s like to be autistic. And though people may have some slight characteristics of autism, there’s a difference between that and actually being autistic, just like there’s a difference between tired and MG tired.

Also remember that just because someone is autistic, it doesn’t mean they have parents or other people taking care of them, and of course services for autistic adults are scarce, and we may have no help at all with no possibility of getting the services we need because there’s such a huge waitlist for the few services that are available. Even for services that are not autism specific, such as housing, it can take years to get into affordable housing that is also handicap accessible. And navigating the world of getting those services is mind-blowing! So you’re sick with a rare disease, may have brain fog, then add autism, and it’s a crazy, stressful mess. Sometimes just a little help can go a long way when it comes to paperwork of the disability/poverty world.

This disease can be harsh. I know it says we can live normal to near normal lives, but what the medical community considers near normal is nothing like normal to me, so that is very deceptive. Realize the challenges we face and the toll it takes both on our body and on our mind. Grief is real. Depression is real. Desperation is real. Despondency is real. Give us grace but also encourage professional help if it is needed.

Also realize that this disease changes throughout the day, and we may not always be able to do the same thing one day that we did another. We also pay a price for when we push ourselves and do things. I can go out one day, but then be down the next two days to recover. With that being said, there will be times where we will have to put our health first and say no, I can’t do this activity or I can’t manage that today. Respect us when we have to put our health first, but don’t forget about us.

For support groups, just give us grace. If you already have MG, you know how hard it is to have a rare disease, so if someone like me has MG and autism, give them that grace. Learn about autism, though I suggest you learn about it through them because each autistic is a unique individual. Plus, some of the things you may read about autism might be a myth or misconception, just like there are things that a person can read about MG that aren’t exactly accurate.

What brings you joy and helps you feel empowered despite the challenges?

I’m so grateful this is ending on a positive note. For me, my faith plays an integral part of my life. I am comforted by the fact that this disease is no surprise to my Lord. Looking back, I can see how He worked so that I had what I needed when I needed it. It hasn’t been an easy journey, but I haven’t walked it alone. My God has been with me every step of the way.

Before MG hit, I was working full time, but my goal was to transition out of that job and go into full time ministry as an author, artist, and public speaker. I had published two books earlier in my life, and I had finally reclaimed my painting, which I had lost for 15 years after I was kidnapped. I was starting to have some public speaking engagements, sharing my story.

I did transition out of my full-time job, just not in the way that I expected. Although my public speaking engagements have tapered off, I haven’t given up, even with the voice issues of MG. I firmly believe that those will once again open up. Even still, occasionally I still get to share my story via the written word, such as right now while writing this.

Although I don’t get to paint as much as I would like, I am managing 2-3 oil paintings a year, and I have prints of my paintings. I have three paintings currently in an art gallery here in San Antonio, and every year I participate in a local Art for Autism event where all the artists are autistic. Thankfully the Autism Treatment Center that coordinates this event is also very accommodating to my physical disabilities as well, so I have the help I need to run a booth for that one day a year. I love the fact that they have this event that allows us to showcase our artistic abilities.

I’m also writing again. I have two published books already, and I continue to write poetry and prose, but with the encouragement of my sister, I have started seriously writing again. This is especially important to me because writing is how I communicate the best. Even as articulate as I can be, it is nothing compared to my writing. My pediatrician friend said that my verbal language was only about 10% in comparison to my written language. I feel alive when I write, and I’m so grateful that that has been awakened in me once again.

Although it may sound cliché, my faith, family, and friends really are the most important things in my life, along with my little Chihuahua, Coco Puff. I did lose a lot of friends when I got sick with MG, but I do have a small core set of friends that I count on. I’ve also gained new MG friends through both the in person and online support groups.

Then there’s my family. I have three grown children and three grandchildren. My husband died over 15 years ago, and so my kiddos and grand-kiddos motivate me to keep going no matter what. I want to be there for them in whatever way I can be. When my time to pass comes to be, I want them to know with all of their heart that their mom loved them enough to fight for every single day for them. I can’t say I’ve been a great mother, because mothering didn’t come naturally to me, but I hope they know I tried my best and fought to live because I do love them so much.

And I haven’t given up on my life. Yes, I’m homebound, but I still manage to do so much more than I ever thought possible. My oldest grandson and I took a trip on Amtrack to go back home to Indiana to see my older son and his son. I needed some accommodations, had to stay inside, and desperately needed IVIG when I got back home, but I got to spend precious time with my family and enjoy the hills and hollers of home.

Then this fall, I’ll be going on a cruise to Alaska with my sister. Again, I’ve got accommodations in place and am trying to prepare as best as I can, but when it’s 90 degrees here in San Antonio, I’m going to be relaxing in the cooler temperatures, enjoying all that this bucket list trip has to offer. MG is not going to stop me from experiencing this once in a lifetime trip.

So, whether you have MG, autism, both, or some other disease, I encourage you to live your life to the fullest. Yeah, I have days I’m depressed and cry and hate my life, but I refuse to give up. I will paint. I will write. I will tell others my story. I will love my family to the best of my ability. I will go on amazing adventures, whether they are to my bucket list location of Alaska or just to the local Doseum with my grandson or just in my mind as I explore all the amazing adventures I have yet to put pen to paper to with little Coco Puff faithfully at my side.

I will live. I hope you decide to live too.