On occasion, as I have been working with Schwannoma Survivors, certain issues come up over and over again. For those who have visited the Schwannoma Survivors & Schwannoma Fighters Facebook page you will have read my attempts to tackle issues that come up - and I think that our blog is also a wonderful place to touch base with those things most important to Schwannoma Survivors. One such thing I wanted to speak on briefly in this blog is anxiety - specifically anxiety related to Schwannomas.
First of all this is real. It's best to just be upfront and acknowledge it is real. It should not be swept under the rug or ignored - if you feel that anxiety, related to any part of the Schwannoma survivor journey, is something that is getting in the way of healing or at least progressing in your life, I certainly urge you to consider useful options. It is very hard for many people to seek professional counseling because it still has attached to it a stigma of weakness - which is, of course, not true. People seek counseling for many reasons, and if a person feels that it may contribute to their overall well being, or if they feel that they have an anxiety issue related to Schwannomas, I would urge them to at least consider it. Though there are other approaches that may be of service to someone if they are open for it. Meditation, reflection, the trust of friends - any number of these things are possibilities.
My understanding is that there is good evidence, from tribal medicine up to modern medicine, that our mental state affects our physical state. One example I have given is that when one of my small kids starts screaming, or when I have to deal with a monster tantrum - I feel my right leg light up with nerve shocks and often feel increased back pain. My Thoracic Spinal Schwannoma was removed completely in 2009 and has not regrown. However I do deal with the nerve issues left over after surgery, and I have found that a screaming toddler can easily have an affect on the kind of day I am having - as well as my pain level. It is surprising to me how fast my body reacts to it.
Many people I talk to feel a number of anxiety related issues when it comes to Schwannoma. Some seem to border on panic attacks. Others report a more generalized anxiety. Some have a great fear that their previous Schwannoma will regrow. Others are troubled mentally by the fact that they only had a partial removal of their tumor - so when their bodies react badly, when nerves fire or when pain comes - they are left perpetually wondering if the tumor will regrow further, of if they are feeling that very process of the tumor enlarging itself and coming back into their lives - signaling more trouble ahead.
I have also spoken to people who have made it very clear that family members, even sometimes well meaning ones, didn't seem to understand what they were going through.
I myself have had surreal, and sometimes irritating, conversations that were something like "Oh, you have back pain...my uncle he had this disk thing..." And when you try to clarify that you had a relatively rare nerve sheath tumor you can see their eyes glaze over in confusion - about 1 second before they mentally check out. In my own case I had a Schwannoma in my spinal cord so I too have had to deal with trying to express that this isn't just run of the mill back pain - this was a tumor inside my spinal cord. This kind of reaction also speaks to the fact that Schwannomas are rare - you will be very lucky ever to casually meet someone who has had one. So, in turn, if so many have no idea what they are, then they have no idea how to react to someone who has this. And we realize that only by making Schwannomas better understood, generally, can we equip others with the ability to be compassionate and understanding about dealing with them.
I do find that most people do mean well. Most of them want to be compassionate and understanding....if they can get their head around what the problem is. If they can't, then the Schwannoma Survivor is left, yet again, staring at a friend or family member who wishes well but doesn't know where to start.
Also, as we explore the issue of anxiety relating to Schwannomas, I think it is fair to say that it happens for people quite differently, one to another, and it changes according to the stage one is at relative to their Schwannoma.
Commonly, if a person has just been diagnosed they feel a great level of anxiety because they have been diagnosed with a relatively rare nerve sheath tumor. Many of us, such as myself, had never even heard of them before we were told we had one. This stage of anxiety speaks to a very primitive and natural human response. Few of us can remain calm when a doctor says "You have a tumor." And I find that for those newly diagnosed, sensible, distilled information is of the greatest help. This is the primary goal of the Schwannoma Survivors & Schwannoma Fighters Facebook page and blog. To ask sensible questions and get practical answers. The hope here is that if a newly diagnosed person gets practical, useful advice - the natural anxiety that comes with this process will be diminished, and hopefully less difficult all around.
There is another stage of anxiety for Schwannoma Survivors in that the surgery which is often required for Schwannoma removal, is frequently problematic - even when everything goes well. A person can still be left with lingering nerve issues, strange feelings, any number of things - after surgery. So once they have done their homework they are often left standing at this fork in the road - where the matter comes down to opting for surgery, with its built in risks and issues - or not for surgery, which so frequently turns into a more anxious and difficult waiting game as symptoms progress and the tumors often grow. Many of us, in our minds, we like clean solutions. Schwannoma surgery doesn't usually offer one. Surgery can usually alleviate the worst of the symptoms, and, in many cases, remove the entire tumor - but one can still be left with nerve issues and difficulties that they may have to deal with from that point going forward. Most people do opt for surgery - unless there are very specific, physician informed, medical reasons for not doing so. However plenty of stress and anxiety is built into this process of having to commit to a course of action about what to do.
Post surgery there is anxiety as well. As a person begins to relearn their own body and rehab themselves from what is, very often, difficult surgery - the question of how much ability one can regain, and how quickly, constantly pursues a person during the recovery stage. And I can also say that from my work, I have noticed that Schwannoma recoveries usually run longer rather than shorter - especially ones of the acoustic neuroma or spinal cord variety. So people can feel frustration at this long, slow journey back to health.
And it would not be fair to not mention our dear survivor friends who have Schwannomatosis. (Schwannomatosis is the genetic condition that leaves a person pre-disposed to Schwannomas along multiple nerve pathways in the body) All of the concerns listed above are multiplied times a thousand for that handful of people who fight Schwannomatosis. The quality of life concerns, the anxieties about whether to have, or not to have, the entire body scanned. The treatment issues as one hopes to keep the best quality of life when dealing with multiple Schwannomas - often multiples at once, those are all very stressful and hard to keep a grip on. I hope that those who have Schwannomatosis have the love, support, and even counseling if needed - so that they can, while trying to keep their bodies in the best condition possible - keep their minds well and their spirits up.
The entire whirl of experiences - the things that happen to a person after being told they have a Schwannoma, these things have many layers and require a great deal of good common sense and compassion to deal with. First comes with acknowledgement - but the experience I speak to also tells me that these mountains can be conquered. People do - and people will continue to do so. Maybe it is up to us, when dealing with anxiety issues that are attached to Schwannomas - to have faith enough in others to believe that they can understand, if we do a good job of expressing to others what we are going through.
There is an old Buddhist saying "If your compassion does not include yourself, it is incomplete." So we should hope, that we remember this at every point along the way of our Schwannoma journey. After all, it really isn't the Schwannoma's journey. It is your life's journey - the Schwannoma is an intruder :) Let us deal with the intruder as best we can - and stubbornly refuse to give up the beauty of the journey.
Neil
