Quite often, as hard as I work, something like an injury or a sudden stressor will cause the symptoms of multiple sclerosis and fibromyalgia to flare up. There is a particular type of Depression that often strikes patients who are on interferon therapy, and sometimes even with the best medications, interventions, and so on, it can continue in a more or less chronic state long after the patient has been removed from interferon treatment.
I was on betaseron, an every other day interferon shot, for just under 5 years. Probably because I also have Chemical Sensitivity Syndrome, I was still losing chunks of hair and puking my guts out 4 times out of 7 even after years. When my granddaughter Tasha was little she would trace around the scars on my legs from where I had dilegently rotated the injection site as directed. Finally, I got to the point that it didn’t matter what fancy cover they designed to cover the syringe – merely having to look at the darn thing was enough to produce the typical anxiety attack symptoms of chest pain, crushing headache, jitters, and feelings of panic. They usually reached a nice crescendo right at that moment that underneath my skin would explode in a rapidly expanding circle of what I can only describe as fire with thousands of tiny legs.
Usually, I would sit there, rubbing the injection site as directed and slowly do my deep breathing and try to pray. Some nights I was lucky, and I would be able to climb into bed and forget that my own immune system had declared war on my brain. Often though, I would no sooner feel that I really could handle this then the bile would come rising in my throat and I would go running to the nearest bucket. I will forever be grateful to my ex, Carl, for all the times he held my long hair up out of reach while rubbing my back.
Needless to say, living your life in this manner, no matter how good other things are, could depress the most wacked out ecstasy junkie. The next time you see a blurb on TV saying that mental health funding is being cut, that hits a whole lot of MS, hepatitis, Cancer, and other aweful disease fighting people. I was fortunate that in a past life I had been a Medication Officer, and Clinical Case Manager in the mental health industry for several years, so finding the right medication to take for depression was fairly quick and easy.
However, it is often the case with people with multiple disabilities that you may tame that little beast, but when an injury or stressor hits, it suddenly rears up and tries to take over your life. This is one reason that no matter the disease, from MS to Sleep Apnea and most everything in between, the very first instruction the doctor gives you is: Avoid injuries and avoid stress.
The last few days had seen me battling that little beast again, and even though I was off ready for a day’s work, dressed in my half-nun best, the battle injuries still smarted. That is when my daughter, Nicole, shared this photo she took with me.
This is a rose from my rosebush. I first planted her with her sisters when they were nothing but a root wrapped in sawdust in a box back in 1997 in Hull, MA. I chose the pink because I loved the color, but also because it perfectly matched the light blue siding and the white vinyl fence I had picked out for our house. I spent hours each year tending my roses, who are the most spoiled plants in the garden. Special food, mulch, sprays, tools – just like my kids I gave them the best that I possibly could. Two of them moved with me after the divorce, taking up residence in a tiny square formed by the low fence on the corner of my apartment building.
In that little garden, one winter, the second rosebush was damaged so badly it never came back. Meanwhile, friends would see this one last symbol of my former upper-middle class life, and my stubborn refusal to let go of the grief of a divorce that had cost me so much, and they brought over all sorts of plants to try to get me hooked on something besides these pampered, expensive, spoiled brats that really weren’t suited to struggling single working mother life. I will admit to a brief flirtation with pansies, but the rosebush remained.
In August 2005, the world crashed in as I went from merely having trouble remembering people’s names to blinding headaches, double vision, and moments I could swear the world was sliding off to the right. Having lived with the unpredictible nature of fibromyalgia since at least 1991, and being in a new, high stress job, I did what I had done since the day my husband told me he didn’t feel like being married anymore. I said a prayer, took my medicine, and got ready for work.
By January, however, I knew something was wrong, and called to the large teaching hospital where my rheumatologist worked. Having left the message, I struggled on for a couple more weeks until one day just days after I had almost not made it into the restroom in time, all the symptoms hit me at once. The nightmare only got worse when in the spring of 2006 I sat in a wheelchair as a neurologist told me and my Mom that the white blob on the right side of my brain was MS, probably Secondary Progressive. Suddenly, she was talking about making arrangements for my kids, nursing homes, and a single small note of hope: “Let’s try interferon”.
I had only been doing shots for 3 weeks when I had my next MRI. During the time I waited for patient assistance to approve me for free care, I, my daughter Janel, and the rosebush had been ripped from the Hull soil and moved to Conway, NH. My other two children had been taken by the monster, forever changing our relationship.
There were days that I would sit and look out at the rosebush and yell at her. “Why are you still alive and healthy? Why aren’t you as broken and faded as me?” And yet, each time the rain did not fall I struggled out there to water her. Living in that most horrible time in a disabled person’s life when you are not able to work, but aren’t approved for disability, I carefully hoarded change to buy rose food. By my second year in Conway, the rosebush and I had made our peace with MS, and we spent the summer days watching the world from that most pleasant spot, idyll retirement.
When it became clear that Carl and I could not stay up north and the small grandbabies down south, I moved to the Rochester area. My parents were moving into the Conway house, starting my Mother’s own retirement, and it seemed reasonable to let my Mother enjoy the rosebush, while I would tend to it on my visits up. For season after season I would call with news of the grands, she would call each time tiny pink petals appeared.
Finally though, the lure of that siren California, with her long red dress and sultry eyes, proved to be much more interesting that the tired old house at the end of a cul-de-sac, and my parents were packing up that long trailer to get shipped cross country.
As I looked at the for sale sign going up, I just couldn’t bear the thought of my rosebush sitting neglected while the house was on the market. I became infuriated at the idea that someone else might come along and rip her out just to put one of those aweful gazebos from Target in. No, I didn’t care if I had no place for her. She was coming with me.
“Brian, I can’t lose my rosebush. Please, just until I figure out where I am moving, can I put her in your garden?”
That yes was just one of the many romantic things my man has done for me, and each time I am out there, telling her in a soft voice to not bite me with her thorns, I am reminded of how he took pity on a sick woman with a homeless rosebush.
This week was a hard battle against the beast, depression. In the end, it was a message from one of our mothers, and my daughter Nicole showing me this photo she snapped in my garden, that made all the difference. My rosebush lives, and so do I.