Tag Archives: helping hands

The Room at the Inn

I’m not much help in preparing the bedroom upstairs for my friends visit this weekend. The main problem is that I just can’t get up the stairs…every step says, “Caution!” Like a trail of red flags, so I just don’t enter. Even if I got upstairs, I am useless in changing sheets; So I resolved to help with any needs for cleaning or preparing either on the main floor or the basement (where we will be using my painting studio to decorate with fabric paints the t-shirts for Sunday’s NF Walk.) ūüôā

With thoughts of vacation, I couldn’t help but giggle in memory of my hotel experience from the Colorado trip two weeks ago. Last Fall, when I was having weekly PT and OT sessions, my Occupational therapist and I discussed a wide variety of ideas to supplement my needs in the areas where I was physically struggling to perform the daily tasks. She also helped me be aware of resources available for when in time I needed more help. Most of the “when in time” resources seemed irrelevant at the moment, since my physical body overall was doing pretty well.

“When in time” moments started catching up to me around February–I think the first being the shower chair. At first I was embarrassed–even to show people my room was enough, because with the bathroom door open, you can see the raised toilet seat handles. Not your typical bathroom. But I quickly dismissed this notion of blush, because it is when I realized that being independent in this area, I saw a blessing.

My OT mentioned a few other future reference ideas, one being the handicap room in hotels. At that time, I had only purchased the walker for my PT exercises as balancing in my Ankle FootDrop braces was near impossible. Even in February, I only used my cane when I left the house. Now the use of my walker is 99%. I even purchased a second walker to keep for house/back patio/basement use, while the older one is left in the garage for when I leave. The plan has worked smoothly, I think.

There is a first time for everything and the Colorado trip held no exceptions. There was the new way I checked through security, pushed in a wheel chair and now the hotel room. Mom and Dad helped reserve a handicap room, but before one gets to their room, they must get in the hotel. We pull in the parking lot and see the main lobby doors cut off in entrance by the yellow “Caution” tape. Looked more like a crime scene from Law and Order episodes. Mom goes to check-in using the only other door on the building,which is the back entrance.

The room itself is quite nice. The only significant difference I noted between this labeled room and a regular room was the bathroom. The doorway allowed room for a walker or wheelchair to easily enter and maneuver around. There was a handle attached to the wall by the toilet, along with a telephone. I suppose if you fall off the toilet, the assumption is that you can reach the telephone to call for help. The shower “chair” was what made the whole first-use-of-handicap-room experience worth it (in memories sake)!

In conquering difficult situations from the eye and body of a disabled person, I often mutter to myself (sometimes probably louder than I should) the fact that if TLC ever wanted a new reality show that I would volunteer; a show following individuals with disabilities and how they overcome the obstacles they face daily…what ones make them cringe, cry, laugh. What situations are easy or ones that are absurd. Most importantly, how it affects those closest to them. Anywhere I travel, someone has to retrieve or pack my walker from the trunk; I can get locked in public restroom stalls, because my hands can’t get the knob to open; or retrieving items at the grocery store often requires a helping hand. Mom and I like to swiftly shop our lists separate, so the last time I was choosing a coffee creamer, I asked a kid looking at the sour cream next to me if he wouldn’t mind helping me get the bottle, as I was nervous to drop and have it crack,¬†then spill (just from previous experience at home.)

It is in this “reality show” thinking that I had to laugh. I envisioned the crew filming me as I show the viewers how the shower is set. It was like camping. At the one end, the shower is the standard shower head (but you could detach it)–the other end is “the shower chair.” Now, I can’t complain, because being able to sit was appreciated; however, this wooden beam of a chair that you folded up and down (but was too heavy for me to fold up upon wanting to get out of the shower) was right in the way of how you normally exit a bathtub style shower. I was barely able to keep a grip on the handles and was thankful not to have fallen completely out. The next shower, I had to have Mom fold the beam up for me before I exited.

I understand that some hotels are older, but in the newer hotels–like the one we stayed in the night before our fight back–I do not understand why there has been no consideration for the shower set-up in handicap rooms. One would think that a walk-in style shower with a sturdy set chair attached would be more efficient for those who cannot get themselves in a bathtub shower. The thought just crossed my mind that weekend as the first hotel gave me much more insight to think of as well: if you’re remodeling the lobby, please make your residents aware that there are missing tiles on the floor when they come in after two days of no continental breakfast to find the place empty of chairs or tables. We used my walker to transport the served cereal back to our room. ūüôā

I may sound on a rant but I don’t mean for this to be so. I just want to make people aware that life brings unseen hurdles in your path and sometimes one needs a helping hand for safety–hence the handicap ramp in the hotel parking lot. Quite frankly, I would not have even called it a ramp, but a slab of steep, skinny, sloped concrete. It was only wide enough for my walker, so if I were using a wheelchair, I would probably have felt safer just hopping the curb. There was no hand railing either; I wanted to quote Marlin from Finding Nemo:¬†

Bob: Hey, you’re doing pretty well for a first-timer.

Marlin: Well, you can’t hold on to them forever, can you?

Bill: You know I had a tough time when my oldest went out to the drop off.

Marlin: They’ve just got to grow up som – THE DROP OFF? THEY’RE GOING TO THE DROP OFF? WHAT ARE YOU, INSANE? WHY DON’T WE FRY THEM UP NOW AND SERVE THEM WITH CHIPS?

Bob: Hey Marty, calm down.

Marlin: Don’t tell me to be calm, pony boy.

Bob: Pony boy?

Bill: You know for a clownfish, he really isn’t that funny

Ted: Pity

ūüôā

Never before my own handicaps and disabilities did I even think of these situations or how an individual lives each day overcoming even the smallest of difficulties. I’m not suggesting that life be easy, because it’s not and experiencing scenarios such as these is very humbling. It keeps me aware of my surroundings and ever thankful for the help in time of deepest need.

*Finding Nemo. (2003). http://www.imdb.com/title/tt0266543/quotes

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Filed under Adjusting to NF2, Family Times, Funny Stories, Uncategorized

A “Pick-Me-Uppy”

During my parents ten-day absence, my Lifeline was set so in the case I fell, triggering the sensor or needed help, thus personally pressing the button–if no one answered with the communicator over the intercom, the Lifeline representative would automatically dispatch emergency personnel instead of calling my parents cell phones, which is usually the prior action in normal circumstances when they are home.

Knowing this, I took extreme extra caution as to my watching my balance (although I could not fully control that aspect) when standing up from sitting at the table or the times of bending over to retrieve something off the floor. I also made certain that I tried my best not to accidentally bump my necklace and set off the sensor without my knowledge. Last thing I wanted was for an emergency squad to come barging in finding me perfectly normal or otherwise startled by their presence. I only had to concern myself with this thinking when I was home alone.

I had an immense!! coverage of helping, encouraging, loving, giving hands during this time. Actually, it is not something new; I just felt the impact of everyone’s generosity and concern more being here alone. And I am grateful…so blessed. There were hot evening meals, invites to get coffee or help me with errands, if needed; there were those who offered to be “backup” plans just in case and one to be available to help with outdoor needs, such as in the event we got snow. I got texts and emails from friends out-of-state making sure I was doing well and had the chance to make a few Skype video chats and call my grandpa as well. The week was anything but the dull-drums! ūüôā

Because I do need more help these days–and just for a safety factor–we did ask two girls my age to help me on a regular basis. One came for a few hours in the afternoon and the other stayed with me late evening until mid-morning. They helped me get to the basement so I could paint, walk to get the mail or take me for errands/church; dishes, folding laundry, cleaning Muffy’s kitty litter and taking out the trash; even getting my compression stocking on in the morning! Things I can no longer do well or if at all on my own. Marcia was around often too, but it was nice not to lay all responsibility on her shoulders; my family does so much already.

However, it was Marcia who saved me from a Lifeline emergency squad experience. The day after my parents left, my friend had invited me over to her house to be with her family and stay for dinner. I had roughly about an hour between my evening helper leaving for the day and my friend coming. I finished getting ready and then decided that I had enough time to quickly check my email. I pushed my walker into the study room to use my parent’s computer as it was more convenient (or so I thought.) I parked my walker to the right of the office chair and was in the process of swiveling the chair around so I could sit when my shoe hit the floor mat and sent me off-balance.

I blurt out, “AH!” and since the chair is also moving, I have no composure–only the downward decent to the floor. Now keep in mind this all happens so quickly, as like my thoughts–and as my head is swarming with perceivable outcomes (emergency personnel, being stuck on the floor, my friend coming), I suddenly feel a pair of strong arms trying to ease or prevent the rest of my fall to the floor. I am Deaf and my position to the computer left me with my back facing the study room door; plus I was home alone two minutes prior.

One would think that this would have at least startled me or caused another blurtation, “AH!”–but instead I am thinking thoughts of an angel. I finally land on the floor sort of siting awkwardly cross-legged and see a whiff of hair out of my right peripheral¬†vision. I tilt my head up and see Marcia’s smiling yet concerned face peering down at me. “Oh! Hello!”…the first words out of my mouth. The Lifeline sensor finally sets off the intercom; Marcia goes to correspond with the representative and then returns to help me off the floor. I would say “impeccable timing,” but my friend that evening declared, “Hand of Providence!” Indeed, it was.

“Thank you.” The two-worded phrase doesn’t seem to circumference the gratitude I have for all that is bestowed…whether in meeting my physical needs or upholding my name in daily prayers. To each of you–may you be richly blessed. ‚̧

You Tube video: (you can click on the song title to be directed o the page)

More Than You’ll Ever Know.”¬†Watermark.¬†All Things New.¬†Rocketown Records, 2000.

 

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Filed under Adjusting to NF2, Family Times, Funny Stories, Uncategorized

Carried in Love

“It happens every time,” I say in tears with a mouthful of a Fiber One bar. I take a drink of my re-heated coffee, then continue, “I do so well; then the week before my doctor appointments, I just don’t!” Of course, I also state in frustration that I think it’s a conspiracy. I am not sure what the case is (definitely not a conspiracy), but this situation does seem to happen most often around doctor appointments. ¬†Maybe it’s just ironic.

This morning was like any other Sunday: a rush getting ready, downing a small breakfast amid hoping to leave on time, but still needing to put on my socks and boots. In my hurriedness coming out of my room, carrying my winter coat and boots, my right leg locks at the knee as I round the corner in which throws me off-balance. I tumble-down backwards, dropping everything and hit my head on the floor. My parents were still here, and within a minute of falling, Dad came to the hallway and assisted in picking me up off the floor.

Just a few days earlier, I spent a whole day conquering my file box! (Also termed: The Twilight Zone!) After hours of organizing and sorting, the results are rewarding. All that was left to accomplish was shredding a stack of old bank statements. Dad un-jammed my shredder and I started happily shredding away! As it starts to fill, the shredder gets a slower speed and makes noises (unknown to me.) Dad comes in and tries to tell me this, but I defend my shredder saying it is able to shred up to so many pages and that it is just full. Not really implying that I need help emptying the bin, Dad makes his way to help me anyway. Sitting on a stool, I start to stand to get out of his way, but result in slipping…knocking the stool over, I too stumble backwards. It was like a crash-landing. I have never hit the floor backwards so hard ever before, and in a moment, I was in the worst pain and instant tears. But Dad was there, and helped pick me up.

As he helped me get comfortable on the couch, I started to feel bad for bickering in justification the few minutes before the fall. Seemed so silly; and Dad finished shredding my papers. This morning, after finally getting my boots on, I realize that I probably shouldn’t drive in the snow that was piling down. I text Dad and tell him I am just going to stay put, safe and sound. “After all that,” I mumble as I go ahead and just brew a new pot of coffee. But I am glad I stayed. My morning readings brought me to ponder God’s unfailing Love, as I thought about my Dad having been by my side after each fall. Truth: Dad won’t always be there, but God is ever-present in times of trouble. (Psalm 46:1)

Missy [his daughter] could fall down and hurt herself, even if I’m walking right there beside her. That doesn’t mean that I allowed it to happen. She knows, as far as unconditional love, I’ll pick her up and I’ll carry her. I’ll try to heal her. I’ll cry when she cries. And I’ll rejoice when she is well. In all the moments of my life, God has been right there beside me. The truth of God’s love is not that he allows bad things to happen. It’s His promise that he’ll be there with us when they do.

–Clark’s response to Marty’s question: Why does God allows bad things to happen to decent people?

Love Comes Softly. 2003. Based on the book by Janette Oke.

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Filed under Adjusting to NF2, Books and Movies, Family Times

Thursday’s Terrible Tumble

Two are better than one, because they have a good return for their labor:
If either of them falls down, one can help the other up.
But pity anyone who falls and has no one to help them up.

Ecclesiastes 4:9-10

I wouldn’t call it ironic, but yes, I did read this passage of Scripture in the early morning hours with my cup of coffee.

The day seemed to start so typical in routine. Awake by 7am-ish, make¬†a cup of coffee, feed Muffy breakfast, watch¬†a deer eat the farmer’s soy beans, eat my own breakfast and morning readings. This morning, my intent was to get to the gym for an exercise before coming home to finish a few lingering projects. I should stop planning my days.

I leave a note for my sister that I headed to the gym with a salutation, “Be back soon, xo.” I had used the bike yesterday, so today I wanted to walk two miles in preparation for Sunday’s NF Walk in Cincinnati in corporation with raising¬†awareness and funds for research with¬†the Children’s Tumor Foundation. We have known about this for months, but I was not fully interested in taking part of the event until I participated in the Miami Valley Women’s Center, “Walk 4 Life,” in May. Shortly after this, I emailed my¬†family to see if they were interested still in the idea, as I would only be I interested if someone walked with me.¬†I would not walk again by myself. Although my parents would be out-of-town that day, my sisters committed to the walk.

So, taking my momentum of excitement to the gym, I decide I can walk the two miles better in a straight line than 16 times in a circle around the indoor track. I go for a treadmill. My thoughts betrayed me.

I was doing just fine. I actually have no idea what went wrong. I¬†am a symmetric person (the accountant in me to balance like an¬†equation), and when I exercise it¬†is no different. I warm up for five minutes then do a faster walk for ten or twenty minutes then cool down for five minutes. I was walking slower than an average person’s stride for the first five minutes, clutching the handle with both hands. I barely notch up the speed to get my legs moving and I don’t even think it was but a few minutes later that¬†I just came down.

It was slow motion: my nose planted in the middle of the handle bar and I try to pick myself up and regain balance but then my feet just buckle from underneath me and down I go…hitting my mouth on the way while belly flopping on the moving tack. I very ungracefully glide off and somehow landed on the floor sitting up cross-legged. I had lost my glasses on the way down so¬†I can’t see and hold my nose and say, “Ow. That hurt.” Then I realize I am bleeding from my nose and considering my fall plus blood thinner pills–well, the equation was very messy and did not balance.

Within seconds I had at least from what I remember, four people at my side. One gave me towels for my nose, another had my glasses and two finally helped me to my feet when I was ready. The lady there helped me to the bathroom to wash my hands and arms and then when I was a bit clean (still bloody nose), I sat out at the tables and they did paperwork. They were very concerned and helped me call my sister (we woke her up) and she came to pick me up.

The rest of the day goes from there…while I sit on the couch with ice on my already¬†blackish-blue nose, Marcia is making¬†all the necessary¬†phone calls¬†in order to figure out what to¬†do next. My doctors at Children’s wanted a CAT scan of the nose and neck to ensure nothing was broken but most¬†importantly the¬†bleeding factor, even though I was not showing¬†any¬†signs of something drastic. We¬†ended up leaving¬†twenty minutes¬†later for the ER and spent the next¬†few hours there. Thankfully, my nose is not broken¬†and nothing wrong otherwise but a low INR count.

The point of my story is not necessarily my poor decision to decide to walk on a treadmill with weak legs and ankles (and not attaching the safety stop clip to myself either), but that I would have not made it through the day without the kindness and help from those around me or those on the other end of the phone with my sister. Even if I did not have NF2, I still believe that after a tumble like that, I would have required a helping hand.

This is why I am excited to be part of the NF Walk on Sunday–because I can be a helping hand in bringing hope to others just as others have done for me.

We can’t do everything, but can we do anything more valuable than invest ourselves in another? Elisabeth Elliot

For more information:

My team, “We walk with Mel!”:

https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=1044487&supId=373310036

NF Walk in Cincinnati: http://ctf.kintera.org/faf/home/default.asp?ievent=1044487&lis=1&kntae1044487=AC40628269E94A3193B4E32ACD2CA733

The Children’s Tumor Foundation: http://www.ctf.org/

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Filed under Adjusting to NF2, Family Times, Hospital Trips, Muffy, Random