My husband sat down beside me today. I could tell there was something on his mind but oftentimes it is something I am neither ready to hear nor equipped to hear. His talks, which I try very hard to not only listen to but hear, don’t have a formula. They can be about a variety of topics although typically these days it has something to do with my disease.
Today he wanted to talk about my journey. You see, a journey for those with mental illness looks nothing like the ones those without the diseases travel. Most journeys for those with a mental illness isn’t about getting better. It isn’t about finding a new life, or having children, or even the ever popular improving oneself. Layman, like my successful husband, can’t understand this.
Journeys for those of us with these diseases is about the ups and downs. It is about watching from a window far away the person that we are currently. It is about not walking away so much as flying away. It is not about the easy or the better but the uncontrollable walk caused solely by the mind. It is not about choice, it is about the mind’s determination.
I wish that I could say that I have power in these journeys. I wish that I could describe to my husband what these journeys are like deep inside of me. I wish I could find a simile or an example that can show a layman what it looks like to spend months walking in a direction that you do not choose.
Almost four months ago I began the journey to change my meds. As all of us know changing meds is like changing the position of the stars; difficult to do and with incredible repercussions. There is nothing easy about changing meds and there is nothing, nothing that can prepare you for it.
But I went into this journey knowing that it was time. I had been on the same medication for years and while many people find comfort in that for me the medications I was taking didn’t seem to be helping in the same voracity that they once did. They seemed to have lost their effectiveness. And I knew.
There are many times in this damned journey that I don’t know who and what I am. I can’t always see what I look like to others or remember what I said that night. There are times when my memories aren’t there and the faces of those I love just aren’t in focus. There is nothing inside of me or outside of me that holds up a mirror to show me who and what I am being.
There are times I can tell from my children’s faces. And there are times I can tell from my mom’s quiet. Mostly it is from husband that I keep a gauge on this disease; or at least he is the most vocal. He is the one that shows me the mirror whether angled by his hand or a straight shot that helps me to try and change my behavior.
If you walk into a doctor’s office and have not thought about the consequences of changing even one of your meds, then don’t do it. If you sit down in that chair across from your doctor and only your doctor wants to change your meds, don’t do it. Don’t do it unless you have thought of the ramifications. Don’t do it unless you have completely and competently thought this out. Don’t do it last minute, don’t do it on a bet.
I have yet to meet a person with mental illness who won’t know exactly what I am talking about. That one pill that changed you into the exact person your family feared. That one pill that changed the rules with those closest to you. That one pill that made you something you didn’t know you could be.
For me, that one pill did a number. It got me so high that I could literally fly. I could run miles even though I haven’t ran since those high school days when I had no choice. I could not sit still. And I mean literally. I had to pace back and forth or around my child because my legs hurt when they were still. It took days after I quit taking that medicine for my body and mind to change. And the weight I lost, let’s just say I got lucky there.
We all have it. That one story about a change in our medicines. I think that it is as much part of the journey as the doctor’s offices and hospitals. You can’t be ultimately healthy with this disease without changing drugs at least once. And we all know there are thousands to choose from.
I, however, wanted pretty much a complete overhaul. I wanted to figure out something new not so I could have more fun, but so I could be a better mother, a better wife, a better friend.
It hasn’t happened that way yet.
I don’t know if it will ever be the same. When we are talking about medications that literally take the fabric of your personality and ripe it to shreds it is hard to tell if it will ever be the same. When we are talking about a change not of medication but of possibility, probability, and most of all personality it takes a long time.
According to my husband I have been a little worse for wear. Because he reads these posts I am going to keep to myself the details, but ultimately I think he is concerned because he has had to wait so long.
And yet this journey isn’t anywhere near finished.
Each month my doctor, who works with me instead of telling me, changes the dosages and the kinds of medication I am to take. And each time he does I get the lecture that I have to call him if something goes wrong. Because there is a possibility something will go wrong.
But I want to smile more. I want to have more energy. I want to feel in ways I have never been able to. I want to take some risks with my medications so I can feel what my husband gets to feel each and every day. I am willing to upset the apple cart if it means that at the end I can relearn how to smile.
The journey has been a very long one, and it promises to be even longer. I imagine myself in a holding pattern. I am not sure if I am waiting for someone to break, if I am waiting for the end of my life to finally smile at me, or if I am simply waiting for that door to be ajar so I can run like hell. This holding pattern is difficult for others because they can’t see what is going on deep inside of me. But this holding pattern is necessary if I want to survive.
I suppose that is the crux of it. If I want to survive this disease I have to have holding patterns especially during great change. I have to make sure that I know how to handle this level, this day. I can’t simply surrender each day and survive. It is a holding pattern that contains an astonishing amount of swimming up stream. Like those pink salmon in Alaska, I know that I am constantly jumping out the water to try and get somewhere but mostly I am landing in the same spot each time.
I am okay with the holding pattern; mostly because there is still a spark in me that wants to make it. I like not having to determine what is next nor translate what has happened before. Instead I can sit here and just make do. One day, I will make it to my home grounds, but right now swimming and jumping in the same place is getting the job done.