Before I begin the story of “our” journey over these last 24 months, I’d like to qualify a few things: I’m writing about my feelings as a mother of a child afflicted with a chronic, serious condition. I’m not writing about myself, which would be easier. Mark is an older teenager and guards his thoughts as most teenagers do. If Mark were 5 years old, my story would be different. I would hold nothing back. If he were 10, I’d tell the story differently. But teenagers are so secretive by nature and value their thoughts and privacy immensely. Therefore, I will have to “hold back” all my emotions (and there any many).
My family consists of my husband, Gary, Mark, now 19, David, 14, and myself. Mark came home one day 2 years ago in November of 1998 and told me that the vision in his left eye was blurry. He also told me had had gotten into an altercation (I’m being a mother–a fight) at school and got punched in the eye. I sent him off to his ophthalmologist, Dr. Gibbs, who saw no damage to the eye. Over the next few weeks, I’d ask him how his eye was and for the most part he said it was “okay”.
A few months later in January 1999, he surprised me with “Mom, I think I’m losing the peripheral vision in my left eye.” That was not something I wanted to hear. This time, I took him to Dr. Gibbs and now the news was not so good. He saw damage to the optic nerve. However, he reassured us he did not see that two months earlier and also said the punch in the eye would not cause that. At least we were reassured that whatever was going on in the eye was recent. Thankfully, Dr. Gibbs said we would have to go to Massachusetts Eye & Ear. He stated that no one in Rhode Island was experienced to handle this problem. Therefore, we did not waste a lot of time getting referred to where we needed to be. He referred us to Dr. Rizzo who is in Neuro Ophthalmology in MEEI. Dr. Gibbs also wanted Mark to have a MRI of the brain to rule out a tumor.
So here our journey begins. The MRI was negative–good news! Our appointment with Dr. Rizzo was on March 5, 1999 at 7:30 a.m. We live in Rhode Island about an hour away (if there is no traffic–never); so we decided to spend the night before in Boston–all four of us– so we wouldn’t be late. Gary and I were full of such fear of the unknown. We tried to keep things as normal as possible while waiting for this appointment with Dr. Rizzo.
I will try to remember all that has transpired during the last 2 years (it’s a good thing that I kept my appointment book). Dr. Rizzo saw Mark and indeed saw damage to his optic nerve. Being totally unaware of any disorders of the eye, we didn’t understand most of what he was telling us but the bottom line was “you need to see Dr. Foster. He is a specialist in uveitis.” Dr. Foster, being so generous by fitting us in right away so we wouldn’t have to come back, saw Mark that afternoon. He had a battery of tests–blood work and an ultrasound of the eye. The diagnosis was posterior scleritis, which is an inflammation in the rear of the wall of the eyeball. Most of what he said was a foreign language to us but Gary and I knew enough to be very worried.
So began Mark’s treatment–prednisone drops in the eye, see you in 3 weeks. Three weeks later, the inflammation was improved but now the pressure in his eye was elevated due to the prednisone drops. Sometimes this happens and sometimes it doesn’t. The prednisone drops were discontinued and 2 glaucoma drops were prescribed. We were to return in one week. At that appointment, the pressure in the eye decreased and Dr. Foster put Mark on oral prednisone.
I know a lot about prednisone because my father lived his last 15 years on it due to a tumor on his pituitary gland. What I didn’t remember was his dosage was so when Dr. Foster said that Mark would start on 100 mg., it didn’t mean that much to me. We were soon to find out that an elephant wouldn’t want to take that dose. But if it was necessary, then we just had to accept it. Mark’s eye did respond to the prednisone but it was very difficult for his body and mind. He went through the weaning of the medication and continued on the glaucoma drops and we went back in 4 weeks.
His eye remained “calm”. He still had a few more weeks on the prednisone. “We’ll see you in another 4 weeks.” At the next appointment, his eye still had some inflammation and Dr. Foster explained his feeling that Mark’s condition was “systemic”. Now, my husband and I are intelligent people and I’m sure we had heard the word “systemic” before but we never had to know what it meant. This is the point where I personally felt afraid beyond belief. “Mark may have an autoimmune disease”. “What kind” we ask.. “Don’t know” we hear. “Mark needs to see a rheumotologist for testing.” We would take him ANYWHERE to get answers.
I know now that the vague responses that we received were what most patients hear but I didn’t know that then. I wanted somebody to wrap his or her arms around me and tell me everything was okay and in the meantime give me a step by step outline of what was happening. “See you in 3 weeks.”
Three weeks later, eye looks nice and calm but the pressure is up more so now we add xalatan at night. “See you in 3 weeks.” This is beginning to sound like a broken record. Three weeks later, good news, calm eye, come back in 6 weeks. In the meantime, we visit the rheumotologist, he runs tests, and nothing is found. That’s great news–I guess. Mark’s next appointment with Dr. Foster was not good. The inflammation was back and now Dr. Foster wanted to give him a “shot” in the eye. Yikes, I thought to myself.
The needle doesn’t actually go into the eye, it is put in the tissue under the eye. Mark was great. “Go ahead and do what you have to”, my brave son said. He received the shot and we heard “we’ll see you in 2 weeks”. His eye must have looked pretty good during that visit because we didn’t have to go back for another 5 weeks. I felt like I was on vacation! Dr. Foster was not pleased with the eye then and talked to us about Mark going on 7.5 mg methotrexate (MTX) once a week for at least one year to try to “trick” his immune system to stop attacking the eye. We agreed and continued over the next several months with Mark on the MTX and glaucoma drops and our visits every 6 weeks.
Mark had another flare up in the spring and Dr. Foster increased the MTX to 10 mg. During his appointment in June, the inflammation was still increasing. Now what? Dr. Foster put him back on the oral prednisone but only 60 mg. Wow, what a relief (I’m being sarcastic). He wanted to see Mark in one week. This is where things started to fall apart for our family. Mark wouldn’t go to that appointment on that day (a Tuesday) so I rescheduled for Wednesday. However, neither my husband nor I could go with him so he and his girlfriend went. I thought this was probably a good idea because she would believe him when he said in the future “I was in Boston all day”. I’m not really sure what happened during that visit and Mark did not keep his next appointment and things have deteriorated since then.
His eyesight had diminished greatly and he was not communicating with us; stopped his medications and he wasn’t living at home during the summer. You’ll need to fill in the blanks. I’m sure that he was filled with fear, anger, self-sympathy (but not even aware of these emotions). He’s 19 and wants to have fun. We want him to have fun. We want his life to be perfect. Isn’t that what all parents want for their children.
This is where we as parents struggle with letting go. We prayed every day that Mark would “come to his senses” and be responsible. We couldn’t control him anymore. We didn’t want to control him; we wanted him not to go blind. We didn’t want Mark to wake up some day and say, “Oops, I take it back”. We would both go blind for our son. It was a horrible time for all of us.
Let’s fast forward to October. Mark is home again and we went to see Dr. Foster. The eye is terrible. The pressure is 40. He’s back on the MTX, prednisone drops every hour, dilating drops 3x a day and the glaucoma drops. “Come back in 2 weeks.” It was while I was sitting in the waiting area that I saw a 4 x 6 postcard with the heading “UVEITIS/OID SUPPORT GROUP”. If I were standing, I would have fallen down. I can’t explain what that meant to me at that moment. I felt as though I were surrounded by a warm blanket of protection and understanding (and I hadn’t even read the newsletter yet). Then I read the October 1st newsletter and specifically Liz Irvin’s story and I knew then that there was something tangible I could hold onto–other people who are suffering like Mark is and their families. (Considering how many times I’ve been to MEEI and the many hours that I have spent in waiting rooms, looking for something to read when I forget my book, I can’t imagine how I didn’t know about the support group, but I’ll get over it.)
Nobody can imagine what all of us are going through–patients, parents, spouses, brothers and sisters–except all of us. I have three sisters who I adore (one being my twin) and they always ask how Mark is. I talk to my twin everyday (it’s a twin thing) and she knows almost as much as Gary and I know and she still can’t know what we feel. It’s not like other chronic conditions like diabetes, arthritis or others. Everyone has heard of those. But who’s heard of uveitis, scleritis, pars planitis, macular degeneration. Probably the only eye condition that people are familiar with is glaucoma. In order to educate all our family members and friends, we would have to talk constantly, and quite frankly, it’s too exhausting and upsetting. So, we try to keep everyone up-to-date with as few words as possible, the outcome being they don’t really understand. But being part of a support group means that whatever I write or say to any of you, you’ll understand, maybe not most of you from a parent’s perspective, but you’ll still certainly understand.
And, I agree with Liz Irvin when she stated in her Newsletter story, “I have come to enjoy watching the young physicians in training as they progress and develop their skills.” Mark and I enjoy seeing the new rotation of “Fellows”. And he’s learned to be patient with the countless examinations by these Fellows. After a bit of a communication problem early on in Mark’s care, Dr. Foster explained to me the difficulty that some people have treating in a clinic setting. I must admit that it took my family a while to adjust to this. But I wouldn’t exchange the hours of waiting, the constant probing of my son’s eye, and what appears to be sometimes a tense atmosphere, to treat in a private setting. My family feels fortunate to be so close to Mass Eye & Ear and specifically, Dr. Foster.
So I will end my story with some background about Mark and some peculiar health issues (and I bet that a lot of you will see something familiar).
So, Mark continues to live his life and we live ours, going about our daily routines (and our visits to MEEI) but the “eye” controls EVERYTHING. I have good days and some very bad days but we try to keep a sense of humor. Mark and I were talking today and I said something about a cut he had on his ankle. I don’t want him to get any infections and told him I was worried about his immune system. He said to me “Mom, my immune system is so awesome that it attacks itself!” I chuckled. We both did.
October 28, 2000