multiiple support system

This morning I got dressed just like I always do except I put my shirt on upside down. Before you think "uh, oh" is up. This one had a printed tag and a "floppy" tag. I followed the floppy tag and to my dismay it was a Chinese Finger Trap after that. Fortunately Bob was there and helped me out. But I was stuck which brings me to I’m glad I now have a roommate for the times Bob is away.

About two months ago, I acquired a roommate.  She was a past driver/caregiver who was looking to move closer to town while she goes back to school. At first I really didn’t know how this would work out since I am used to being on my own now for 9 months. We had a typical startup relationship-- “bumps” One night I came home late and really tipsy after an annual girlfriend Christmas party.  I came inside and went back out to close the garage door.  Upon reentering, I fell and yelled for my roommate for help. I did not realize she had to get up the next morning at 4:00 am and she was angry with me that I was insensitive to her schedule.  She was also worried about what I would have done had she been not been there.  I apologized and we moved on.

I am happy to report after two months it is working out to have a roommate.   I appreciate and like the company; I  enjoy her youth (she is 19) and perspective.  I have a sense of calm knowing she is here and Bob has a sense of calm knowing I have support in the event of an emergency.  The point is that stroke survivors need a support system and need to “think outside the box” when it comes to support with a focus on not leaning on my spouse for 100% of my care. Support systems for stroke survivors come in all shapes and sizes.

Romance

I don’t often speak about Bob and my relationship.   I tend to focus and write about his role as my caregiver.

What I crave and nag him about is romance.

After 30 years of marriage and 7 years of post-stroke it’s difficult to “conjure up” romance.

But, I digress

 Last weekend I went to New York to be with 3 of my sisters and see my niece Angela perform the lead role in the play “streetcar Named Desire, “I was anxious to see if I had the stamina to travel like this and have it be a template for future travel.  We spent 3 hours at the Guggenheim museum and visited the new 9/11 Memorial. Our first trip to the memorial was just after it happened and now I went back to see how they honored the victims.   My niece was exquisite in the role of Blanche.  I sat through her 3 hour performance thinking I believe she could be a star one day.  Learned I can do things like this and the lesson is to get out of your comfort zone if you can. 

 

Upon returning to Texas, I stopped in Houston.  As I was wheeled out to the terminal, there was a man on my left who said to the wheelchair attendant:  “I’ll give you $10 bucks so I can take that girl for a beer.  He said: “ Well, Who are you?”  “I’m her husband,” says Bob.  He surprised me and came to be with me during my two 2-hour layover in Houston that turned into a 4 hour layover.   If you travel, you know it’s almost impossible to get through security without a ticket, but Bob found a way.  Now that’s what I call romance; Not, jewelry, gifts or nice dinners but finding ways to be together.  It was a perfect end to a perfect trip.  Thank you Bob.  The picture below captures my glee upon seeing Bob.

prevision

I sometimes have to write about topics several times. At the risk of repeating myself to let the message “sink in”. This time it’s about stroke survivors needing something to look forward to. In my case it’s an upcoming trip to New York. The trip is centered on visiting my niece and attending A Street Car Named Desire, in which she has the lead role. I’m meeting three of my sisters in New Jersey. We are planning several site-seeing activities during our visit including the Guggenheim Museum, the 911 Memorial and hopefully, the Donald Judd exhibit. I find myself energized. While planning, though, I have to consider how not to be a burden being with three able-bodied adults. To that end, I am practicing walking so as not to be a burden while walking in the cold. I have to figure out how to increase my stamina and be able to do things out of my comfort zone since I’m used to staying home most days. This includes walking in different temperatures, on uneven payment, and in new territory that I may or may not be able to navigate. Being with my sisters is a great motivator since they are fun, highly intelligent, caring women. I will report after my trip with an honest assessment of my ability to travel. I also view this as a test. If I accomplish my goals, i. e. stamina and walking strong, it may mean future trips with Bob where I am not a burden, which should be the goal of anyone with a disability – standing on their own two feet (so to speak).

figure it out

You’ve heard the saying: “things happen in threes.” Well they did for me lately. The things that happened to me fall under the category of “just figure it out.” The first is I’ve been riding my trike for almost eight months and every single time someone has had to help me put my left foot in the stirrup. Last week while waiting for my neighbor to do this for me, I just took a little more time and was able to do it myself. I can now ride my trike whenever I want. The second thing was I took the Mega bus to Houston last weekend. Traffic was so bad leaving Austin that a three hour trip turned into a five and half hour trip I had no choice but to use the bathroom on the bus. To do this required walking from the front to the very back while the bus was moving. The width of the bus is about 6 inches. While walking to the back I had to hang on to the headrest of each seat I passed while furthering my cane down the aisle. Because I only have one functioning hand, I couldn’t do these things simultaneously, so the people on the bus would take my cane and push it forward for me row by row. In two instances people were sleeping and the people moving my cane would tap the person to wake up and move the cane. Never underestimate the kindness of people. When I got go the back the bus, it started rolling again. I cannot under any circumstance go to the bathroom while the bus is moving. A gentleman at the back allowed me to sit next to him. The third occurrence was today in the shower. I am totally in no clothes and realize too late that the soap and shampoo are out of reach. I cannot stand without my brace so I sat there for several minutes and weighed my options. If I try to stand, I could slip in the shower and no one would find me. I figure out the only course is to get dressed and put a sock and brace over wet legs. In the past with all three of these examples I probably would have relied on Bob to come to my rescue, but this was not an option so “I figured it out. It makes me stronger; makes me less reliant on Bob, which is what we want and it makes me want to tackle new things.

new sisterhood

I went to a movie with my friend Patty yesterday and she suggested I blog about my trike rides and events around them and the fellowship that occurred as a result. I generally ride in the mornings for two hours 3 - 4 days a week. Often I see my neighbors from their cars. One of my neighbors helps me on the trike. As a thank you gesture, I invited four of the neighbor women for wine and appetizers one evening this week. A couple of the women I had never seen outside their cars. We discussed making this get together a regular occurrence. One neighbor suggested we start a kind of “sorority” and we should give ourselves a name. At my age it is not that common or easy to make new friends and my stroke brings out interesting behavior in others. Neighbors and my new friends want to go out of their way to help me. Since Bob and I are often apart, it is very comforting for both of us to know we have such a strong support network. Stroke survivors need many different types of support and this group provided a great respite. They helped me know that I can build new friendships and there are many caring people in this world. …It takes a village to raise a child; it takes a village to support a stroke survivor.

motivators

Before my stroke and when I worked fulltime, I was busy all day, every day. I have not experienced this kind of busy until the last couple of weeks. The first of the two was the planning and hosting our first artist reception in our new gallery, in Houston aka, Capitol Street Gallery It was the most fulfilling time for me – to have something to look forward to every day that did not include rehabilitation. I did, however always include some form of daily exercise. Two sisters visited me prior to the reception and one after. Their visits were timely and also kept me busy. Just having the company puts a spring in my step. In addition, I am a volunteer for the Greater East end Houston Management District. Since we will live in the East end of Houston when we move, I have a vested interest to get involved with the activities in this district. Since I don’t work fulltime, I should always have something to occupy my time and skills. When people ask me how I spend my day I’m very conscientious about my answer. As my sister Martha, says, “If you can’t find volunteer work, you’re not trying.” I am currently planning future artist receptions and my goal is to try and always have something to look forward to. It’s huge motivator. Stroke survivors like others need a reason to get out of bed every morning.

devotion

I have a favorite lyric from a song in the White Christmas movie:, “There were never such devoted sisters.” I experienced this devotion in the last 10 days during two of my sister’s visits to Austin. Theresa came first and we had a lot of fun. We had really good meals together, saw two movies and attended the “One night with Janis Joplin” show. Theresa along with my siblings also gave me with an astonishing birthday surprise on Friday. With Theresa, you have to be a little careful what you say because she makes dreams come true. She knows I have a goal to be able to sing again. She arranged for me to have four sessions with a vocal coach. After session two, I am singing, albeit not pretty, but I’m doing it. Together we are trying to “find my voice” again. Susie then arrived and we met up with Theresa in Houston to visit my parents. It was a thrill for me to observe the devotion and kindness they show my parents they made healthy, wonderful meals, developed a more healthy meal plan regimen. They wanted to ensure my parent’s quality of live is the best it can be at their advancing ages. They developed memory tools for Mom. Upon our return to Austin, Susie was then focused on getting her daughter safely ensconced in her apartment. She took the time to see to my every need before her return to Las Vegas. She made sure that I had food prepared throughout the weekend and we brainstormed tools to improve my independence. She and I discussed how I could live more frugally. I miss them terribly now that they returned to their homes. Stroke survivors tend to need care giving from multiple sources. As the music goes, it was true in the 50’s and true today; I am so grateful and fortunate to have five such devoted sisters.