In Their Own Words

Hubert Smith
Rhinelander WI
wheels141[AT SIGN]hotmail.com

It was the beginning of the new year, 2001. I had been dating my fiance and we planned on being married on my birthday, January 5th. I would marry my fiance and turn 40 all at the same time. Our wedding night was the nicest day of the week, which included a beautiful sunset.

I had no idea what I would be facing in the next couple of weeks. My thoughts were on us that night and I was really happy. It was my first marriage. My wife, Mary, had been married before and now I have two beautiful step children, 15 and 17. We were married at our church, the Church of Christ in Rhinelander, and we were having a great time.

We went on a short honeymoon. Soon after that we were settling into our new home. We were working on the house to get it ready for the kids to move in. A couple of weeks later, Mary got sick and then I got sick. I then got pneumonia.

I had planned for a special night for Valentine's Day. I had made reservations for dinner for us at one of our local restaurants. I had been going to a chiropractor for some upper back and neck problems. The doctor had helped me with adjustments.

Two days before Valentine's Day, my upper right arm and my upper back were hurting me when I woke up. I was getting really weak. My wife was taking the children to school. I asked her to come back to take me to the clinic. On our way to the clinic, I was hurting so badly that we changed our minds and went to the emergency room.

While I had just gotten over the pneumonia, my lungs were still congested. I had an elevated temperature and I was in severe pain. The doctors gave me Tylenol for my temperature. They never really had any reason to keep me in the emergency room. They gave me pain shots and my temperature came down. They also prescribed me some additional medication for the pain in my back and neck.

After they discharged me, I went home. My wife went to work. I went to sleep, because I work the night shift and was planning on going into work that night. Later in the afternoon, I woke up feeling better. I was moving around okay. I was expecting my wife home soon with the children. She was also picking up my medicine on the way home. At 4 PM, my wife had dropped off the medicine and left right away to take one of the children to the library. I was about to take some pain medicine and I realized that pain was shooting in my right arm, upper back and neck and also my left arm.

I was quickly getting very weak. Being alone and not knowing when my wife was going to return, I called the emergency number. When the ambulance crew arrived, I could barely stand up. I managed to put on the flannel shirt Mary had bought me while we were dating. They put me on a stretcher and carried me to the ambulance. I was on my way to the hospital in an ambulance and I didn't know what was happening to me. I had been in fairly good health. We had just gotten married and life was supposed to be all good.

My wife came in shortly after I arrived at the hospital. She saw them picking me up at our house and was wondering what was going on with her husband. I had decreased movement in my arms and I was tremendously weak. I told the nurse that I needed to go to the restroom, but then discovered that it was difficult to go.

The nurse immediately put me on an IV for fluids. I couldn't feel a thing when they inserted the needle. I wasn't numb, but it didn't bother me. I did not understand what was happening to me. The doctor said that I needed to stay in the hospital for further tests. They admitted me to St. Mary's Hospital. They took blood samples from me and ran many tests. I was exhausted. There was extreme tingling in my arms and legs. I was beginning to lose movement in my right leg. My arms were hardly moving. They ordered a MRI scan the next morning. The scan indicated marks on my spinal cord in the lower back region and in my neck. They put me into intensive care where they could monitor my condition more closely. They put me on antibiototics and steroids.

The results from a spinal tap were negative, and the MRI scan results were positive. They said that I had Transverse Myelitis and they explained that it was an infection of my spinal cord. I suffer from diabetes, which I have had for some time and have learned how to deal with. Now I had to learn how to deal with this, too? Wow!

I was in ICU wondering when this was going to end. They had a neurologist examine me. The doctor told me that my recovery depended on my immune system and they said that it could take months. They also said that it could turn into MS.

I had some set backs due to my lungs that were really congested from the pneumonia. I was beginning to eat. I could hardly swallow. I was only on a liquid diet, and I lost some weight. The staff in the ICU was really courteous and they really wanted me to get better. I had to say a lot of prayers. My family visited me, as did members of our church. I wasn't alone through this experience. I thank every one for being there. I needed a lot of encouragement and support and love.

I managed to get better. I still could hardly move my legs and I was barely moving my arms and hands. But I was making progress. The doctors were looking for a rehab facility for me. I was transported by ambulance to the rehab unit at Saint Joesph's on February 23rd.

Slowly, I was getting better. It was painful, tedious, anxious, frustrating, sad and happy. You go through so many emotions when you are wondering what your future is going to hold. This has been hard on my wife especially, because we had just gotten married earlier in the year. She also has had health problems. I felt sorry many times when me and my wife had disagreements while I was in the hospital. I didn't know what to do or say. I wanted to express my love to her, but I couldn't. I was just very frustrated. The doctors and the therapy departments were saying that I would be in the rehab unit for about three months.

I did have more set backs. I had blood clots form and a pulminary embolism. I was moved to a medical unit until the healing process was completed. They said that I was a prime candidate for a green field filter to be placed in my main veins or artery. So, I had to go through that operation, as well. The filter would help to prevent more blood clots forming. I have to take lots of medicine now, including blood thinners. I knew that the good Lord was in control. I soon got better. They discharged me from the medical unit and I was put back in the rehab unit. My lungs were getting better so they took me off some of the medications.

I was slowly getting stronger again. They allowed me to go to a local church to help me get used to going out in the community. I couldn't walk and I could barely move my arms. We take so much for granted. I couldn't scratch myself when I had an itch. That is frustrating. I couldn't feed myself and that was hard to accept. In occupational therapy they were teaching me to use a hand lifting device so that I would be able to feed myself. That process was sad and frustrating. I kept dropping my food and it was hard to scoop my food up on a spoon.

The therapy department was really respectful. They understood my frustration and anger. I knew they were well trained and knew how to deal with me. Until you are in a hospital like this, you don't think about the many different diseases, accidents and general health problems people suffer from.

I began to think about what I would do when I got out of rehab. I have an art background and I was thinking that I could continue with it, if I got better. So, I kept this in mind. My family and my wife started to bring me drawing materials as a way to help me get the frustrations of TM off of my mind. I was able to do some drawing, and I was getting better at moving my arms and hands. I was even able to feed myself again. Oh, boy! Yeah! Amen! I was thanking the Lord. My prayers at the local church were for the hospital staff, my wife and everyone that was there for me. I started with a standing machine with a hydraulic lift on it. It made me sick to stand. I was wondering whether I would be able to get my strength back to stand and walk again?

I managed to progress. I met a lot of nice people in the hospital. I made it through Easter. My family took me and my wife out for dinner and we put our problems out of our minds for that day. The hospital had a nice activity program, which also helped. We made decorations for Easter. I even made some decorations for their therapy bulletin board. I was regaining most of my strength back. I still had trouble going to the restroom. I was developing a better attitude and I knew that I could only get better. With TM you can feel better on some days and then on some days, you feel worse.

Just after Mother's Day, the hospital staff met with us and decided it was time for me to be discharged. I was getting better. I still had a lot of pain in my stomach area. I decided that this was going to put too much stress on my wife and I decided to go into a nursing home until we had arranged for home health care. My wife didn't understand why I wanted to do this, but I knew it was the right approach. I had to focus on getting better, so I could go home. I stayed at the nursing home for about a month and a half. I went home in the middle of July.

The pain in my stomach has gotten better. I still have set backs. I was going to outpatient rehabilitation. I was thinking more positively and I was gaining confidence about being home. I have in-home health care nursing aides that help me. This has been so hard on my wife. She helps me, she has to take care of herself, she cares for the children, and she is also going to school. TM has been a trauma in my life; and it has been so traumatic for the people I love.

I'm getting better but I have frequent muscle spasms in my lower back and constantly in my legs. My hands are much better, but they feel like wood. They have a slight tingling affect to them. I always had feeling, but my sensations were off a bit. It is hard to determine hot and cold sensations around my legs and hands. When I shower, I have to test the water temperature on my shoulders.

I can use a walker now and a quad cane for short distances. The physical therapy and the occupational departments now have me on exercise programs that I can do at home. I use a wheel chair for long distances. I have to be grateful at this point in my life. When I first got TM, I was not able to do anything.

I miss the company of my wife. It is hard on us. I hope she can come to understand that adjusting to my illness has been a new process in my life. I don't fully understand what she is going through. Getting to know her is part of the process of marriage. I just hope and pray we can have peace and contentment with each other and that we can be at each other's side again. Our church is helping us to better cope with our current health problems and finances. We have a nice church. I miss having my wife here and I love her a lot.

It is now January, 12th 2002. It is past our first anniversary. I'm presently taking an at-home course on computer graphics. It is a two-year course and I am three-quarters of the way finished. I just hope my health continues to get better. I'm also in a graphic arts program at my local college. I would like to complete this program. All I can do, all anyone can do, is to have hope and trust in the Lord to keep going.

This has been my experience with my past year with TM. It has been a year of change and learning how to cope with all of the changes.