What I learned battling covid with a severe disability

In November of 2020 I was devastated to learn I had developed diabetes at just 33 years old. Even though it was the beginning of the pandemic my doctor told me I had to be admitted to hospital. I face a few things with fear because I already have a disability called cerebral palsy. Just walking was difficult, painful and very tiring. At this point in my life I was using a walker and had to use personal support workers every morning to shower and get dressed. My life was already very stressful, isolating and depressing. I had few friends, and I never left my apartment.

I could not walk more than 10 minutes at a time so I barely got out of my apartment to do “normal things." This would only cause my physical condition to deteriorate over time. I was losing my mobility faster than I could mentally adjust to the changes. When the pandemic hit now I really could not go anywhere and do anything. I spent hours in my chair, and my legs got weaker and weaker. Something as simple as going to the grocery store brought me such joy and gave me the strength I needed to move forward. I was able to go outside and interact with people in the real world. It was such a privilege and a blessing to be able to participate in society like “ normal” people do. Winter was an enemy of mine. I dreaded its arrival every year. It caused me to experience a deeper level of depression than usual and I would battle suicidal thoughts. Everyday I had to convince myself to get out of bed. In the winter months I would spend six months or more tapped in my apartment. The days went by slowly and painfully. My mental health and ability to interact with others was taken away from me completely. The task of taking care of myself was getting more difficult to manage.

Able bodied people had never really experienced such painful isolation until the pandemic hit. But for me it was a rather cold reality of my existence. I was serving a prison sentence not because I had wronged society but because I was born differently. If you can't do things for yourself you are condemned to a life of hardships and severe isolation. I would be a prisoner in my own home for the majority of my life, and I had to accept that. When the pandemic hit I was already a master at being lonely, very limited in what I could or could not do. I already had no control over my life or personal freedoms. Able bodied people enjoy such freedoms and blessings without really thinking about it. It is a gift to be able to walk, get in your car and go for a drive. After the pandemic people realized how precious these small things were in life and how vital they were to our overall health. It caused a major mental health crisis globally . That is why disabled people suffer with depression, anxiety and suicidal thoughts. We are not bitter, angry or resentful. We are not allowed to participate in society wholly and completely and that would hurt anyone. We need human interaction to live, it is as vital as air to breathe.

As a result I would have endless stays at the psych word, and be abandoned in several group homes. I was abused in several of them. One group home starved us to save money on food. Others would be so dirty I would get a severe bowel infection called c-diff and almost died from going septic. My health was never the same, I would be admitted to the hospital for years to come battling the consequences of this disease. Some group homes would put my room in a place that had so many stairs I could not get to the bathroom on time. I would have accidents and be yelled at by staff and belittled by other people living in the group home. Verbal abuse was just the reality of being in the system, and affirmed my belief that I was not worthy of life. I had to be institutionalized, and my only crime was being born. Then one day my mom abandoned me in a respite home after I was released from the hospital yet again .My legs were swollen from being given too much fluids and I could barely walk but my mom did not care. Neither did the respite home, they put me in a room with stairs and I would struggle to get in them every night. I would cry to my mother to take me home, and her rejection affected my self esteem for the rest of my life. The respite home said I had two weeks to find a place to live.

They never could say what was wrong with me mentally, but I did. I couldn't handle my life and the way I was born and the limitations it would bring. I couldn’t handle being abused by the world around me. I was told over and over, “ you do not belong.” They gave me a diagnosis of bipolar. But really I was acting out in a world that did not accept me and did not want to love me. I would have several breakdowns throughout my 20s even suffering from psychosis from the stress of trying to live on my own. Learning to survive in a world that didn't want to take care of me would be a lifelong struggle. I will write more about my past in the future.

I thought learning how to take care of my diabetes was going to be one of the greatest challenges of my life so far. I already survived the unthinkable. I knew I could do this. It was overwhelming to have to give myself three shots a day of insulin per day, and check my blood sugar over five times a day. I was also in danger of passing out when my sugar went too low. Already suffering from severe depression and mood swings made diabetes that much more intense and unbearable. Diabetes would make me feel so incredibly sad, hopeless and anxious. One minute I would be happy, the next minute I would be crying uncontrollably. Then I would be so angry that I would not want to be near me. I would get lost in my thoughts and negativity and sit for hours staring at a wall trying to get out of the deep hole my mind had put me in. I have asked God many times why I was born with way more than I could ever handle in one lifetime. But as I would learn, one crisis after another would present itself. It was so dreadful all I could do was survive one moment at a time. I was in crisis mode every day of my life, and just when I thought it could not get any worse, it did.

A week after I was discharged from the hospital and had control over my new diagnosis I was told by public health officials that I was exposed to covid-19 while in the hospital. It was in the newspaper and classified as an outbreak. I was not afraid I was filled with dread because I knew I would have to suffer all alone. How am I going to take care of myself? When I get sick I can't walk, period. Was I at risk of dying or suffering more damage to my health ? I already had underdeveloped lungs and other conditions that could mean covid could take my life. I had no family to care for me. I had no friends to call for comfort. Come to think about it, I was never afraid of something like death. Living was always the hard part.

After a week the symptoms started. The body pain is indescribable but I will try to put it into words in hopes that you will believe me . It's deep body pain that is in the muscles and the bones and makes you so tired all you can do is sleep in utter misery. I was so weak I couldn't even move from my chair. I sat so long in the same place I would cry out in pain, but was still too weak to move to ease that pain. When I would cough I couldn't breathe at the same time so I felt like I was suffocating. When you cough you feel like your body is breaking apart into little pieces. It felt like my bones and lungs had little fractures in them and when I moved my body the pain was unbearable. I ran high fevers for a week straight. My only relief was taking Tylenol cold and t1s. My body is already in intense pain because of cerebral palsy, but the covid pain brought me down to my knees. My mental health deteriorated rapidly. I cried all day everyday. I tried to watch movies and really escape into the lives of the people being portrayed. I watched movies about profound hardships and true stories of survival to try and send the message to my brain that I could overcome this great test. I thought there was no end in sight.

I find this very sad to admit but my only friend was God , and I prayed often. Once my personal support workers found out I had covid most of them abandoned me for fear of getting it. However by law they had to provide care so strangers entered my home every morning and left as soon as they could. They had a lot of anxiety being near me, and it made me feel like a horrible burden. I felt like I had gone mad talking to myself for hours on end. I would beg God for the end of my symptoms. I had no appetite, and food tasted disgusting . I lost over 20 pounds in three weeks, which was honestly the only positive thing I experienced. But my battle was not over.

After covid my kidneys malfunctioned, and my body went septic. When you go septic you have a 49% chance of dying. At this point so much was going on I was numb and I did not care what the future held for me anymore. Doctors believe that I had a bladder infection while I had covid and it spread to my kidneys and then leaked into my bloodstream. My body was overworked and tired. X-rays showed marks on my kidneys from the strain they were under. I was in the hospital for over 9 days. I feel pathetic admitting this now; but I liked being in the hospital sometimes because at least I was not alone. I could interact with nurses and patients and I felt like a human being again. I slept well because I felt safe in the hospital, I always had physical help when I needed it to. I tell you loneliness kills the human spirit and its will to live. How bad does your life have to be that you look forward to going to the hospital? I guess I was desperate to feel a connection to humanity.

After I got home, I was so weak I could barely take care of myself. I stopped eating all together. I had to go back to the hospital because I developed severe anemia and malnutrition. Within this time I would also manage to conquer my diabetes. In five months I almost reversed my diabetes, and I showily got off insulin, and medication. I gave up sugar and lost 40 pounds. My doctor says if I continue my hard work I could reverse my diagnosis completely. My diabetes is only at 5% at the moment so the odds are in my favor.

My family thinks everything I go through is my fault so I have a lot of guilt. My family thinks it is my fault that my mobility has declined and I got diabetes. They were not around to support me when I needed it the most. This made me feel so unloved. I felt I mattered to no one. The lack of insight and empathy in my family has made them blind to my situation.It made me feel like everything was my fault and I did deserve to be here. Every time I got sick it meant another hospital stay and learning how to care for myself. No one ever visited me, I had to be my own cheerleader and I tell you it was exhausting. I didn't know who I was fighting for and why.

My body has never been the same after all this happened. I could barely walk before covid but everything I went through made everything worse. Everyday I feel like the floor is falling beneath my feet and the walls are closing in. I did not know what a peace of mind was anymore. I thought so much about what could go wrong that I vomited regularly. I would think and analyze about my conditions so much that I went mad with fear and uncertainty . They had to increase my medication to help me sleep. Everybody always says, " everything is going to be okay." But what if it's really not and you're not sure if it ever will be ok again? When you're a very sick person no one wants to hear how bad it really is. No one wants to be around you, they don’t want to face what you are going through, They think you are being negative, and they can't empathize with you anyway. You're truly on your own.

Another devastating symptom has started and I am at a loss as to how to help myself get better. I suffer from severe fatigue. I want to walk, I have to walk to be able to live independently. But I have no energy. I went to the hospital barely able to talk. I was so weak and the doctor only thought that I was going through a mental health crisis and that he needed to check my mood stabilizer levels. I was dismissed and told, “ if you need to sleep 16 hours a day do it, it's your body telling you something is wrong.” I was sent on my way not even able to walk out of the hospital. I wasn’t allowed to bring my walker in the ambulance. I was abandoned in the ER to somehow find my way home. No one answered my calls to get a ride home. I was stranded for a couple hours until my friend found out what happened and picked me up. The doctors thought this extreme fatigue was in my head, it made me so angry at the world. My experience was not real and did not matter to anyone.

Meanwhile it felt like there were bricks on my chest and I often woke up gasping for air feeling like I am going to pass out. When I describe my symptoms everyone thinks I am crazy and being dramatic. I am used to not being believed, when you have a disability no one believes what you are going though. Especially when it comes to pain and suffering.My lungs were already underdeveloped, but now they are permanently damaged. I can barely walk from my living room to my kitchen and they are right beside each other. I am lucky if I can walk for 1 minute with my walker and my balance and ability to hold my body up is gone. I don't know where my life is heading and sadly it means I need a wheelchair in the future. This is so scary to me. How will I manage on my own? How will I do things for myself? I know my family will not be around to help. If I can't do things for myself they would likely abandon me in an assisted living home. That would mean I would experience loneliness and isolation at a whole other level and at such a young age.

My hair fell out in chunks as well. Doctors think it may be because of covid, stress or anemia. My quality of life is gone and I am only 34 years old. My only means for connecting to the world is through Facebook. I do the same thing day in and day out. There are only so many books to read, Netflix shows, news and YouTube videos to watch. Everything is so negative and it fills my head with utter nonsense. If you can't even walk to a car to take a cab, what can one do? When you have a disability you have to be bigger than your body and possess so much inner and outer strength. What if you have nothing left? What hope is there? That is when you start praying for a miracle or a way out.

I have a scooter and the cab company won't let you sit in the back of a wheelchair cab even if you can't walk. You can only sit in the back of a cab in a wheelchair, it's the law. You have to get off the scooter and somehow go to the front seat which is high off the ground because it's a van. When I was sick and had to go to the hospital, the cab driver demanded I get out of the back and into the front seat. I was so sick I couldn't find the strength to do so, he abandoned me and I had to find another way to the hospital.

My occupational therapist said she would not approve a device that I could go outside in, because my device was not for " having little adventures." No, it had to be used in my apartment. I am not allowed to have basic rights and freedoms to go outside. I am disabled. I am serving a life sentence in my home. So I use a scooter that's meant to be inside to go everywhere, even though it's not very safe. I'd rather die trying to go somewhere and do something then continue to be locked up in my apartment. I still am trying to find a will to survive. Why am I here anyway? My soul is strong- but even this test has brought me to my knees crying in shame. My disability has robbed me my dignity. I get embarrassed so much I don't get humiliated anymore. I am so used to being exposed and stared at. I am broken on a whole other level.

In four years disability tells me maybe I can get a wheelchair and maybe I can get something to carry me into this world. But first you have to get someone to approve it, so it could take years longer. I have been conditioned to think I am worthless and a financial burden on society. I have two Bachelor's degrees and one diploma. I can't even work to use them. The helpless feeling it gives me is hard to put into words. When you don't have a purpose in life, it kills you inside slowly everyday. I have to convince myself to carry on. I hope one day I do not suffer so much and I find a purpose. But the reality is as I age I can only expect things to get worse. Maybe sharing my story of great hardship and deep sadness will help someone else. I long for a connection to my community.

I hope things change for disabled people. We are the last minority to have a real movement and see lasting change in the world. Society creates the obstacles that keep us isolated from the world and participating in society. We need more inclusion, because our hearts and minds are dying from lack of affection and meaningful friendships. Long before covid we were losing our minds and losing hope for a better future. When will we have an uprising? When will disabled lives matter?

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