Saturday, March 1, 2014

Stroke and loss of friendships

When you have a stroke, relationships change. It is inevitable that friends sometimes cannot deal with the change.

Depending what kind of stroke you have, I assume friendship after stroke "depends."

When my first stroke happened, we were all in shock: me, my wife, son, brothers, extended family, parents, friends, and, admittedly, the public because I was well-known and an elected official.

The first day or two, I was getting better quickly, and my biggest concern - other than worrying about the stroke and my recovery - was keeping my mother and the public out of the loop. And also trying to reassure our six-year-old son that dad would be okay.

I simply wanted to keep this low-key and to not make a big deal of it.  Several of my closest friends visited me at that point.

Three days later, when I had a massive stroke, it all changed. When I was struggling to understand what was happening to me and I could not communicate. I know the waiting room was filled with friends and family concerned about me. I know there were lots of tears spilled -- including my own.

After the massive stroke when I was too scared to be alone, wonderful friends and brothers took shifts in the hospital so I wouldn't be scared.

Three months after my stroke, my friends and family organized a huge benefit for me. Over 500 people came, and they raised so much money for my rehabilitation. Even now I am dumbfounded and humbled. Two years later, that money is still paying for my rehab.

My rehab was initially very intense. I could not communicate at all. I had aphasia -- still do  -- and apraxia. Reading is still a struggle. I cannot work, and now I cannot drive for awhile.The seizure last month was a surprise, and I have residual issues with that.

I started to notice that I was somewhat isolated. Part of that admittedly was because of me. I was depressed and mad. I didn't really want people to see me. As a communication major who made my living speaking and writing, I did not want people to see what I became because of the strokes. I didn't want people to think that I was a pity case rather than a survivor.

But as the months passed, I started to notice that some of my closest friends didn't come around as much. 
These were not my Facebook friends (I have 1,000 of them).  Some on my closest friends treated me just the same which was wonderful. But some of my closest friends seemed that they were like mourning the loss of their friend.  

It was like a death but there was no corpse. 

I found some friends judging the life choices my wife and I made for our new life. Ironically, those friends who had so much advice rarely came around.

I did a test. I usually initiated the contacts. So, I did not contact them just as a test. Sometimes weeks go by with
 no contact. When I did see them, we would laugh together and sometimes have dinners.

And then like a phantom, they are gone. It seemed like a penance like going to church at Christmas and Easter.  "Great! I did my time so I won't feel guilty for a while."

I have researched a lot about lost friendships and strokes. I found a simple article that I am going to plagiarize because it is the best example how I feel.

I asked several survivors, caregivers, and professionals about why they thought friends disappear after a stroke. Here is what they said.

•       Some friends are uncomfortable seeing a once strong person that is now suffering with a disability which is sometimes extreme. It might be similar to visiting a cancer patient that has little time to live. It is easier to avoid the discomfort.
•       A stroke alters a person’s life. It can change the survivor’s values, goals, attitudes, etc. When these changes occur, whatever the survivor and friend had in common in the first place, may be lost after the stroke.
•       Sometimes, different emotions that are the result of the stroke, such as depression, unexplained crying, anger, etc., can make it difficult for the friend to remain a friend.
•       Sometimes it is just that friends have moved on in their lives. They get married; they move; they have children; they are involved with a host of activities, or their job becomes demanding. Perhaps they now have someone in their own family that needs their attention. The point is, they have moved on to life’s changes and the survivor has not.

So what should you do if you, the survivor, would like to reconnect with old friends and establish new friends?

•       Old Friends     Even if married, having friends to do things with is very rewarding and it is important to give the caregiver a break. First, you must take on an attitude that says, “I can handle rejection and I will become an initiator.” Start out by trying to re-connect with old friends that you haven’t seen for awhile and that you think you would like to see. You will know soon enough if they are interested or not. Remember, rejection is OK.
•       Facebook        Many people in your circumstances have found friendship on Facebook. Friends on Facebook do not provide the same type of friendship as an in-person friend, but it may be a good supplement. You can accomplish the same thing by participating in a stroke chat site.
•       Support Groups
Another way to meet new friends is to join a support group. I have talked about the value of a support group in previous articles that I have written for Strokenetwork.  Invite someone from the group to have lunch, or better yet, start a once a week lunch group. You get to pick the people that you think might be interested.
•       Class   Take a class in an adult night program that you can handle and would interest you. It is another opportunity to meet new people. The same can happen at a house of worship if you are so inclined.
•       Get Out There!  The main message here is to get out and take the initiative. Don’t wait for people to contact you.  The more you get involved with community groups and in groups with other stroke patients, the more you can expand your social life.

I'm so grateful to have my wife and my brothers. I am happy that I have some friends stayed friends! I am appreciative that I am on so many boards and helping people. Most my friends have no idea what my family does every day. For those friends that do, I'm indebted.

Certainly the loss of friendship is hard often. But I'm looking forward to forming new friendships that will last in great times and bad times. Isn't that what friends are for anyway?

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