The Disappearing Act

The number one thing people like to say to my family is “let me know if you need anything.”  I realize they probably have good intentions but I have also realized this is their key phrase for several reasons:

  • It gets it mentally “off their plate.” They can think of my family and then think to themselves that they need not worry because they said “let me know if you need anything.”
  • They care but do not know what else to say.
  • They care but do not know what to really offer to do.

Here’s the issue with this when your Mom has something like MS- MS is not temporary. It’s not like Mom is in the hospital for a little period of time and we need someone to feed the dogs. It’s not like Mom is going to get well and needing your help is temporary. MS is going to continue but I have noticed that the offers of “let me know if you need anything” tend to discontinue after awhile. Not that people do not offer, instead they disappear.

I have noticed recently that a lot of our family friends don’t call as much. Couples my parents used to get together with do not get together with Mom or Dad or call to check in on them. Instead they have just disappeared. Mom gets down thinking she doesn’t have any friends. The primary people in her life are Dad and her two care takers. She text messages her close group of friends from college on a daily basis on a big group text. She keeps up with people on Facebook. She essentially watches life go by as she sits still at home.

It is sad and something that is starting to bother me. I told Sister K from now on when people ask if they can do anything or ask how Mom is doing, instead of giving them an answer about her physical health, I am simply going to respond “She’s really lonely. It would be great if you would give her a call or stop by to say hi.”

I am curious what people’s responses would be in that scenario. Would they act? Would they call? Would they follow through? I think the sad part is I honestly do not know. People get busy. They forget. They don’t understand what our family is going through. They don’t understand what it is like to have a Mom in this situation.

What lesson have I learned in all of this? I have learned do not ask if people need anything. Instead insert yourself into their life and do something. Do not wait to be called. Take the initiative and make the call.

Choose not to disappear. Appear. Appear again. And appear again. I promise I am never going to forget who showed up during this time. I am also never going to forget those who disappeared.

What are your thoughts on the phrase “let me know if you need anything?” Has your family ever gone through something tough and people stepped up or people disappeared? How do you manage emotions of being disappointed by people in your life? 

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Be Aggressive. Be Be Aggressive.

In a perfect world dealing with Mom’s MS would only be stressful because of MS. It would not be more stressful because of others. People around us would cooperate and be helpful everywhere we went, they wouldn’t make comments, give us looks or stand in our way. I learned a brutal reality while we were on vacation last week that it is very much not the case.

In the real world, people stepped in front of Mom as she tried to roll around in her scooter. They would sit and stare at us when we are trying to help move Mom. They slam doors on us. They say rude comments when we are trying to use the scooter through the lobby. People are rude.

The most shocking moment of the trip is when we boarded the airplane second in line behind someone who was so not handicapped the thought of it still makes my blood pressure rage. We flew Southwest Airlines and they select which wheelchair is going to board first based on what method I do not understand. Because if it was by need, we would have gone first. We informed the gate attendant that Mom was going to need a physical lift, aisle chair and assistance to get on the plane. The gate attendant took another woman who had her own wheelchair and her husband who followed behind and they rolled on to the plane and took the number one spot. Mom on the other hand needed to be the first on the plane because she had to use an aisle chair to get to the first row. These people just sat and stared while mom was wheeled in her aisle chair and had to sit in the second row because they had taken the first row on the left, the only side she can transfer to easily.

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I realize there are a lot of reasons I may not be able to see why someone may need a wheelchair. Allow me to explain- How do I know this woman didn’t need this extra assistance and position in line? Because my family was the last off the plane. And after everyone was off and we were waiting for assistance for Mom the flight attendant said, someone left their wheelchair. Someone used it to get on board and then left it. She was trying to figure out who it was and I knew exactly who it was because I had watched this same couple walk off the plane first without their wheelchair. I was livid and kept my mouth shut in offering up the information I had about the owner of the wheelchair. You needed to be the first on the plane in your own wheelchair yet you didn’t need it when you got off? Is this a joke?

The flight attendant also said it is interesting that they usually board about 9 people with wheelchairs and miraculously cure about 4 of them in the air and they walk off the plane. People who just want to be on the airplane first. Can you believe this? I would never even imagine doing something like this but it is happening all over the place on Southwest Airlines. I personally think it was to do with their boarding policy being first come first serve. I need to watch more closely the next time I fly a different airline to see if the same issue exists. As this was my first time flying with Mom, it was the first time I actively noticed this.

So where does Be Aggressive come in? Well in a few distinct instances:

  • The security guard wanted mom to take off her shoes to be wheeled through security. This is actually a big ordeal and painful for Mom- I should’ve said no.
  • We should’ve demanded Mom be the first on board. I guess the reason we couldn’t is because we were focused on about 500 other things at that moment and you are at the attendant’s mercy, Mom has MS- when you are actually handicapped nothing is easy and people should be respectful of that piece of your life. 
  • A man yelled at Mom to slow down in her scooter through the lobby when he was the one who stepped in front of her. I should’ve turned around and yelled back. 
  • On the return trip I was trying to get Mom’s medicine out of her overhead bag while people were boarding the plane, not blocking the aisle at all, and instead of giving me a minute the flight attendant yelled at me that there was no baggage space above. Get a grip jerk! I snapped back I am not trying to put a bag up I am trying to get my Mom’s medicine down and sat down- without the medicine.
  • The police officer yelled at me when I drove the car up when we had arrived home telling me I couldn’t leave the car parked there. I said I had two wheelchairs inside and he continued to be condescending, yelling at me to move it. I yelled (because we were communicating in a loud environment not even near each other) I’ve got a Mom with MS and an 86 year old Grandfather. They can’t physically get out here. So he backed off and said I could have a few minutes.

But still. It shouldn’t get to that. It is just the initial gut reaction society has that you are in the wrong, you aren’t telling the truth, you are taking advantage- guess what society, you could try to help us out just a little bit! Sometimes we are at our wits end with everything we are juggling and all we need is someone to be nice to us and our family. Someone to hold a door open. Someone to help me find room for my overhead bag. Someone to make a funny comment to Mom. Because those tiny things, they did happen during our trip and they may seem insignificant but they meant the world to me and made me feel like we were going to be okay. They made me feel like other people had our back.

I imagine it is because of people like I described above who are so clearly taking advantage of the systems in place for handicap people that those who truly need the assistance have to fight to have it. I say fight to have it because that is how I feel. Numerous times did Sister K and I have to get aggressive with our voices on the trip to get people to move, to get things done and to get some help. It is not in our nature to do that or to respond in that way. We were raised to be polite and not stir the waters until necessary. We are being forced to learn in a strange way how to stir the waters and how to quite honestly, BE AGGRESSIVE, BE-BE-AGGRESSIVE.

Lesson Learned: Look out for others when you are traveling or in daily life. Get out of your own bubble and recognize when someone may need some extra assistance or just an extra smile. It can be more powerful than you realize. And if you are on the receiving end of rude people or poor service with a loved one, get into the habit of fighting back for your loved one. Don’t think about it or think about if you are being rude. Just do it.

I am curious if other people have had similar issues with traveling, people taking advantage of handicap situations or people being rude? Or maybe you remember a distinct moment when all you needed was one person to show you some kindness in a very stressful situation and they did, reminding you that people are good? 

Checklist Stress

My family just returned from a week long vacation in Las Vegas. Dad, Mom, Sister K, Grandpa and I all went and flew together from home. Husband wasn’t able to make it because of work. This trip has given me so many thoughts, feelings and emotions I need to flush through. The biggest of all- the lack of control and anxiety that comes along with traveling with Mom who right now for all purposes is essentially handicapped. Mom cannot physically stand or walk therefore she needed wheelchair assistance from the beginning to end.

Monday came, our official travel day, and I woke up early and just felt stressed. On top of everything else it was also pouring rain which also added another item to the list of things I cannot control- weather.  I felt like the entire day was a long check list and I would finally be able to let my guard down once we were physically in our hotel rooms and I knew we had made it.

What was on the checklist?

  1. Get Mom in the car to the airport.
  2. Get Mom out of the car at the airport and into a wheelchair. Get Papa a wheelchair too.
  3. Get luggage checked and boarding passes printed.
  4. Get Mom and Papa through security.
  5. Get to the gate early enough for pre-board.
  6. Get Mom on to the plane with special assistance of the aisle chair on the plane.
  7. Get Mom off the plane in Las Vegas.
  8. Get Mom back into her wheelchair.
  9. Get our bags.
  10. Get a car to drive us to the hotel.
  11. Transfer Mom from wheelchair to car.
  12. Transfer Mom back from car to wheelchair at the hotel.
  13. Check into hotel and hope we were able to get adjoining rooms.
  14. Arrive in hotel room and figure out how to get Mom into a different bed.
  15. Get food for everyone.

And that concluded Travel Day.

I would say this was the most stressful day of the entire trip. Even traveling home was not nearly as stressful. But I felt like the entire day I had a check list in my head and I was checking items off as we went along. Monday evening Dad, Sister K and I all went downstairs to get food for everyone and we all had a cocktail while we waited for our food. I felt like in that moment of cheers it was to think we did it! We made it.

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I keep running everything through my mind wondering how I could’ve had less anxiety or less nerves about the situation. Sister K seemed fine. Dad seemed a little stressed but is much more deal with the challenge as it comes. Do I think about it wrong? Do I need to stop thinking about the overview and go one step at a time? Can a person change how they deal with things like this? I know Sister K didn’t have a running to do list in her head on travel day. I don’t know.

We did make it though and it all worked out great. But now in hindsight there were important lessons I want to remember for the future.

Lesson #1: Try not to let the overview of the entire travel experience overload your emotions. In my case there were honestly moments in the morning before we left for the airport that I felt so stressed and overwhelmed that I secretly felt borderline sick. That’s not good and I need to find a way to process that better.

Important to Remember: It always somehow all works out. It is stressful in the moment but in the end it figures itself out. You can’t predict every bad scenario and the outcome. You also can’t have a back up plan for every plan.

I learned a lot on this trip and plan to spend the next few weeks processing all these lessons…but overall:

  • Did my family bite off more than we could chew taking Mom with MS and Papa who is 86 to Las Vegas? Maybe.
  • But was it worth it because of the memories we have given them and now have? Yes.
  • Will we do it again? I don’t know.
  • Am I glad we did it this time even with the additional stress? Absolutely. 

How do you handle stress of the unknown in these kinds of situations? Do you ever find the task at hand daunting because of all the to do list items it involves? Do you have experience traveling with someone handicapped and managing the additional items involved there? 

We Never Stop Learning From Our Mom

Going home is always interesting right now. Always. I feel like new challenges emerge, new themes within myself and new themes within our family. Everytime. As I am managing Mom’s MS I am also managing myself. I am learning a lot about myself in the process- learning that there are some things I have to improve upon to make me a better daughter but in another way to make me a better person. It is almost as if Mom is still teaching me even though she thinks she isn’t. She is still molding me as Mom even when she doesn’t realize it.

Slowing down: It is no lie that when Sister K and I go home we are forced (not necessarily by choice) to slow down. Our family moves slow, we can’t go anywhere quickly, we run late to everything and we don’t do nearly as many activities as we once did on the weekends. There is a lot of lounging around. A lot of just being.

Slow Down.

Being Present: At home it seems we are constantly multitasking. Constantly. I feel this a lot especially internally. I am looking at what we need to get done during the day. Looking at the point we are at currently. Trying to rush to get errands run, feeling stressed and uneasy about things that need to get done…and in the process my body is present but my mind is not. When every time and I do mean every time we somehow get it all done. And if we don’t get it all done we manage to figure out an alternative. It is like I can’t just have faith that it will all work out, knowing in the past that it will all work out and just chill out. Maybe it is a control thing or the inner planner in me…I am not sure…but I do know I become so fixated on the tasks we need to achieve instead of being present for the moment happening right now. A moment I probably won’t get back.

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Enjoying Moments: I have got to find a way to calm the voices inside of my mind, calm the negative thoughts, calm the worries and just focus on and enjoy my moments at home. I am not saying everything is perfect and that ever moment is enjoyable. We deal with a lot when we are home and do a lot to help Mom in order to give Dad a break. We are not perfect. There are moments where it is too much for Sister K and I step in or vice versa…or moments we notice Dad struggling and we step in. We read each other very well and I do consider that a major blessing. But at the end of the day, these moments regardless of how mundane or boring they may seem to other people, they are our family moments right now. This is the time we have been given to spend with Mom and I need to be present for them and enjoy them. I need to put aside my phone, put my thoughts or worries aside knowing they will all get done and just be present.

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It is amazing to me but Mom is still teaching me through this, she just doesn’t realize it. She is teaching me to be still and to be present to better enjoy moments like the above- an afternoon movie with Mom, Sister K and our dogs. Mom’s MS is full of tough times, special moments and lessons learned. The journey I am taking as being a part of this is molding and shaping me in new ways everyday…I just need to take a step back when I get overwhelmed and remember that.

Do you have trouble with being still and present in life? How do you allow yourself to quiet your mind and enjoy moments? Do you think sometimes the smallest and simplest moments are also the most special? 

I Can’t Fix This. (and I am slowly becoming okay with that)

There are two sides to MS in my life- there is what Mom is going through and there is what Dad is going through. I see both sides. Or I should say I hear both sides. More specifically I heard both sides on the phone yesterday.

Mom is in pain. A lot of pain. She is also pretty much bedridden right now. It’s the first time I have said it that way but that is what it is- Mom is pretty much confined to her bed. Her physical therapist has recommended she possibly go back to the rehab facility she was in post-hospital in May 2012. She thinks it will do more for Mom than she can do with just a couple hour visits a couple times a week. Mom feels helpless. Mom feels bad for the burden she is placing on Dad. She feels sad that this is happening. And I get it.

Dad is overwhelmed. Rightfully so. He is going nonstop these days. He does have someone in our house both during the day and at night to help Mom. But on the weekends he is on his own. He’s also just mentally going nonstop. Running his company. Running our house. Also managing Papa’s life. It’s a lot. I have known this for awhile and unfortunately instead of getting better with the addition of help in our house it kind of seems to just be a small band-aid.

But for the first time I really didn’t get overwhelmed/depressed/stressed by this. I listened to Mom and talked to her. I listened to Dad and talked to him. Then I got off the phone and just sort of let it all just settle into the back of my mind. I am not avoiding the issues but I am also not focusing on them. I am beginning to believe we are reaching a cross roads with all of this. A cross roads which I am not sure what the result is going to be because for once I am finally admitting I not only don’t have control but I also can’t fix it. The two biggest things I struggle with I am slowly realizing to let go of them. Call it growth. Call it faith. Whatever it is, I need to trust it to guide my family and me through the challenges we continue to face.

Thanks to this place for listening. And thank you for being a place for me to share my struggles. I think I have experienced this little thing called growth thanks to this other little thing called my MSRecess.

Have you ever had a challenge or struggle that you finally just let go of? Have you ever experienced issues with trying to control or fix things in life and finally realized you just can’t? I’m not an expert yet but I hope I am slowly getting there. I’d love to hear your tips when you feel challenged by life.

How Well Do You Know Yourself?

I don’t like change. This isn’t really some new revelation to me and it is also not a secret confession. I don’t like change. I get a lot of it thrown at me it seems and I really don’t like it. It is such a normal statement for me to make that I even made it while chatting with my boss at lunch today while we were talking about our lives. I don’t even remember specifically what we were saying but I said, “Yeah well it makes sense because I don’t like change.”

She laughed and said well that’s funny because you are in PR. And we moved on to talking about other things. But the comment hasn’t left me all day because it’s true- I work in public relations- a career that no two days are alike, I never know what will be thrown at me when I walk into my office in the morning or even the second half of the day. The media could call, I could need to pitch a story, a crisis could occur…there is a constant unknown and that means a constant ability to change.

Yet I don’t like change.

It never and I do mean never occurred to me that the career path I have chosen for myself is in direct conflict with who I am deep down. Or is it who I am deep down? Do I really dislike change as much as I think I do? Do I really struggle with it as much as I think I do? Because I do really well at work. I do really well with the thrill of all of suddenly being thrown the impossible and making it possible. It’s a stressful period while I am making it happen but once I do, it is a complete rush.

It’s just got me thinking. They say opposites attract when it comes to significant others, but do you think opposites ever attract when it comes to a career? Is my work persona who I really want to be in my personal life…or is it who I already am, I just need to realize it?

Lots of questions here today but definitely no answers. I do think the thought and connection has entered my head for a reason…now I just need to figure out that reason.

Have you ever worked in a job or volunteer position that requires skills that are opposite of your personality? Do you think we are ever drawn to tasks that are opposite of what we think we would really prefer? Do you ever think we believe our personality traits are one way, yet really they are another? 

A Cupcake Epiphany

I am not exactly the most natural when it comes to cooking and baking. I get very intimidated and stressed out in the kitchen. Cooking is not my thing. I am always worried I am going to kill Husband. I have been told I would be better at baking because things have to be exact and that’s the issue with cooking is that well, it’s not as exact.

I had the genius idea that I would bake Halloween cupcakes for Husband to take to work. I was actually pretty excited and feeling empowered. I had even found a clever recipe to use. At lunch today I bought all the ingredients and after work I decided to begin.

All was going well and according to plan, and just as I had put my first batch of 12 in the oven I thought wow, not too much to clean up. Then it hit me- I forgot to mix in the eggs. On a boxed cake requiring only three ingredients, I forgot one of them.

Cupcake Disaster

As I tried to decide what to do I figured I would just let that batch go. There was no hope and no saving them. I decided I would just mix the eggs into the remaining batter. Then I proceeded with baking the rest of the cupcakes as planned. There was another tricky part though…the batter now was not as thick after adding the eggs. I don’t think it was ever supposed to be thick but when it was thick it was easier to put in the liners. The thin batter was thinner and trickier- it actually just required more patience.

Then it hit me for the second time tonight, I am lacking patience. Patience in life. Patience with Mom. Patience with myself. Patience. It’s a big thing I struggle with from a tiny thing like putting batter into cupcake liners to a bigger thing like patience with my loved ones. So  I stood there slowly drizzling the chocolate batter from the spoon into the liners and I clearly had time to think. I am notoriously hard on myself when I mess up but really, I am just not patient with myself. I give myself one chance to get a recipe right and then I get frustrated and give up. Or if I mess up a recipe as I did tonight, I try not to be hard on myself yet deep down I am because I ruined 12 cupcakes. If I can’t be patient with myself how can I expect to be patient with others? It’s something I am chewing on tonight as I sit here and chew one of my cupcakes. And just so you can see my final product-

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Do you struggle with patience? Do you believe sometimes we can struggle with being patient not only with others but patient with ourselves? Are you a natural chef or baker? Have you ever forgotten an ingredient in a recipe? What do you think of my cupcakes?