Transverse Myelitis Paralyzed Woman Seeks Grant Money To Rebuild Life
by Gail Jackson
He works for a retail grocery store here in Bethel, Alaska, where we live. He is the Manager of the Meat Department. We have three children. Jake is 24 and married with a daughter who is about to turn a year old. He is in the military and currently in Iraq flying drone planes. Justin, just turned 21, lives in Idaho and is engaged to a wonderful girl. He has been battling health issues, but is hopefully on the mend after gall bladder surgery recently. He is hoping to start school in Arizona in November. And Joie, our youngest, at almost 13, lives here in Alaska with us and just started Junior High School. She is bright and beautiful and very artistic. In November of 2009, I got up and showered and began getting ready for work, like any other weekday. We had only been in Alaska a few months, and everything around us, the town, the people, were still very new and unexplored. About 15 minutes after I got out of bed, I got a sharp pain between my shoulder blades. I thought I had just slept wrong, or moved wrong maybe. As I dressed and started to blow dry my hair, the pain moved to my chest. I started to become concerned that I might be having a heart attack. I called my boss and left her a message saying I wouldn't be in and then called my husband and told him I thought maybe he had better come home, as I wasn't feeling well and might need his help getting to a doctors office or hospital. After hanging up the phone and getting my daughter out the door to school - I didn't want to scare her, so just said I was staying home, because I wasn't feeling well - I attempted to get up off the couch and go down the hall to get dressed. I hadn't taken but a few steps and my left foot and leg started dragging. I couldn't lift my leg at all. So I went back to the couch to wait for my husband. By the time he got there, which was only about thirty minutes from the time I had called, I was unable to move my left foot or leg at all, and the right leg and foot was very weak also. He called 911 and the paramedics came and checked me over, and took me into the hospital here in Bethel, Alaska. We are approximately 500 flight miles west of Anchorage, Alaska, accessible only by plane or boat. I spent most of that day in the hospital being watched. They took several tests and decided I needed to be flown to Anchorage for further diagnostic testing and treatment. I went alone, as we really didn't know anyone here well enough to leave our daughter with them, and we didn't know how long I'd be there, so decided that my husband would stay in Bethel with our daughter to try to keep some type of normalcy in her life, if possible. I spent the next six weeks in two hospitals in Anchorage. I had numerous blood tests, MRIs, spinal taps, CT scans, etc. I was so weak I could not even sit up in bed without help at first. I had next to no balance, was unable to walk, or even stand and lost control of bowel and bladder. The final diagnosis, after about 10 days, was a condition called Transverse Myelitis. It is caused by damage to the lining that covers the spinal cord. It can be brought on by a lot of different things, and the cause of mine was never really nailed down, although the doctors think it was caused from having the Swine Flu, possibly. I spent several weeks in a Rehab Unit of Providence Hospital in Anchorage, Alaska, before coming home to Bethel just two days before Christmas in 2009. I am dependent totally on a wheelchair now. Still, after almost two years, I'm unable to stand unassisted and to do many things I used to do. I still have no control of bowels or bladder. And fatigue is a very big issue for me. I weaken very easily. My body cannot regulate its temperature, so I am very prone to overheating. I also have to take precautions not to let my legs get cold, as I cannot feel hot or cold in anything below my rib cage. I have seen some improvement with hard work and Physical Therapy over the past two years, but will probably always need to use the wheelchair. I currently am on government disability, have returned to work on a trial basis, but am unsure that I will be able to do that for very long. I try to make the most of the blessings I have, as many with this condition have it much worse. I have been able to adapt my home, partially to be accessible, but there is still a lot that needs to be done. We live in company housing, provided by my husband's employer, at this time. They were wonderful about making sure there was a wheelchair ramp when I came home from the hospital. There are some doors that I am unable to get through with my chair, so my daughter has had to take on laundry responsibilities, along with many other things I am just physically unable to do. We are considering a move into Anchorage, which would enable me to have better access to medical treatment, as well as entertainment opportunities. I would like to get licensed as a nail technician and open my own business. I would need to go back to school for this, so would need a hand controlled accessible vehicle and money to pay for the schooling. We are helping my son to be able to go to school in November, and between that and my medical costs - paying off doctors and hospitals and ongoing expenses such as catheters and depends and such, we just don't have the money for school or even for a vehicle to make it possible for me to gain some of my independence back. I have a manual wheelchair, so ramps and any type of distances are difficult for me. I don't leave the house without a family member with me. And with my daughter in school and my husband working, that means I seldom get out of the house. My husband takes his break in the morning and comes to pick me up in a friend's car and takes me to work, makes sure I get up the ramp, and then after work, I usually taxi home. Either my husband or my daughter has to make sure one of them is home to get me up the ramp and into the house, as it's too steep for me to manage it alone. I cannot get up to the sink in the kitchen to do dishes, as it is not an accessible home. I can't do laundry, as the door to the laundry room is too narrow. I am hoping, that if we move into Anchorage, we can find a place that is either accessible, or buy a home, and make it accessible. I was under contract with the school district at the time I became ill. They allowed me to finish out my contract from home. I am drawing disability from SSI now. I am attempting to return to work approximately 35 hours a week, however, due to my health, I have not been able to do full weeks. I have been back to work for only a month, and missed nearly half of those days due to my health issues. I am looking for grant money to both assist in purchasing a home, and making it accessible, and for purchasing accessible transportation for myself to be able to regain some independence. I am also interested in obtaining grant money to enable me to go to school to get a nail technician training and licensing I might possibly be interested in opening my own nail salon. I have not researched the details of this as of yet, as I first have to get licensed and trained as a nail technician. This is something that I would pursue down the road, once I am trained and have some experience. I would probably want to work in a salon for a time before considering opening my own.
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